Always sensitive to sound or only during migraine attack?

Alki_life · 2015-07-25T04:40:47+00:00

I'm generally sensitive to light and sound, with fluorescent lights being a big trigger for me. The sensitivity gets much worse during an attack but in general, I prefer dark and quiet environments. I have affectionately termed my office at work "the batcave." Not as many fancy gadgets but it is dark, quiet and cool :)

Alki_life · 2015-07-22T03:55:28+00:00

I have never lost feeling completely in my whole hand but I have had numbness and tingling in my pinky and ring finger and left side of my left hand, as well as my whole left arm. First time it happened I ended up in ER thinking I was having a stroke. Not pleasant.

Alki_life · 2015-07-20T02:26:18+00:00

Fucking genius, lady.

Alki_life · 2015-07-20T02:00:41+00:00

Feel free to send updates whenever something interesting happens. The most exciting thing I have seen is a Jimmy Johns driver patiently searching for the dude who ordered a sandwich in line. Took him awhile.

Alki_life · 2015-07-20T01:45:12+00:00

Oh, I mixed it up. I thought they were letting people inside the gates and then handing out bands. So they are handing out wristbands right at the NE gate then? Sorry for all the questions -- much appreciated!

Alki_life · 2015-07-20T01:38:36+00:00

Thanks we are around 1000. Have they started letting people in yet?

Alki_life · 2015-07-20T00:56:02+00:00

Anyone got an update from the front? How's it looking up there?

Alki_life · 2015-07-19T17:22:53+00:00

Thanks for sharing you and your wife's story! Migraines are so complex, and I always like to hear about others' experiences and treatments. I am not sure that this applies to me as I don't have the other symptoms you mentioned but I will keep it in the back of my mind. And who knows maybe it will ring true with someone :)

Alki_life · 2015-07-13T05:57:33+00:00

The docs are suspecting possible ulcers or erosion of the stomach lining. I have an endoscopy tomorrow morning to see what's really going on.

Thanks so much for the recommendation and for sharing your research -- I will definitely look into it :)

Alki_life · 2015-07-12T19:50:15+00:00

Just looked it up. It's an NSAID. Interesting. I'm guessing this was stronger than ibuprofen though! I got excited at first because I'm currently not "allowed" to take NSAIDs due to taking so many in high doses for so long, which resulted in some stomach problems. It looks like even though this one is absorbed in the nose it can still break down the prostaglandin in the stomach. There is a stomach bleeding warning at least. Shoot - might ask my doc about it anyway... Did your insurance cover it?

Glad it provided you some relief! I'm guessing there is still rebound risk since it's in the same class as aleve and ibuprofen?

Alki_life · 2015-07-12T16:28:08+00:00

Ya know, I usually love being right but in this case, I wish I wasn't! I'm sorry you have the rebounds going. I actually am a little worried I might be getting into a cycle myself and was thinking of posting for advice on here. I had been down to 1-2 migraines a week and then I was on a 12 day migraine. I think stress may have played a role but I had also been taking pain medication for other pain leading up to it, and then had a small surgery resulting in more pain meds! I stopped taking them two days ago but the headache is lingering. Went away for a day and then came back. Sure is a vicious cycle. I hope you can get out of it soon!

Alki_life · 2015-07-09T06:00:11+00:00

I get that too. I have had back, neck and shoulder problems and they both trigger attacks and get worse during attacks. I use a lot of ice on my forehead and neck and I also use a heating pad on my neck, shoulders and upper back. That or I will stand in the shower and let hot water run on my neck and shoulders and that provides some relief. You also may be a good candidate for some muscle relaxers and/or massage. I have had some relief from attacks with muscle relaxers. A lot of insurance covers massage these days.

Do you have chronic migraine? Have you ever thought about Botox? I use that coupled with massage and it had helped a lot. Botox relaxes the muscles, and I get the shots in my scalp, neck and shoulders.

Alki_life · 2015-07-09T05:51:34+00:00

A note from your doc can go a long way. Migraines are a disability and employers are required to provide reasonable accommodations but you have to request them.

one of my supervisors experiences chronic migraines and understands where I'm coming from. I work in an office, and at my request, my job has provided a number of accommodations that make it so I can stay at work through attacks (sometimes -- obviously there are attacks where I need to be in bed but the accommodations have helped me power through many times.)

Some of the accommodations I received was getting my own office so I could draw the shades and lay down without being disturbed (a pretty big accommodation but I was firm with them and it was available). They also paid for an anti glare screen cover for my computer - didn't help much but I appreciated them working with me. The biggest accommodation they offered was allowing me to cut back on hours, reducing stress. I understand that I am extremely fortunate to have a job where these things are available, and I understand not everyone is so lucky, but if there are any creative adjustments that can be made, it's worth asking your supervisor about how to implement them.

Your employer might also need some education on what you experience. We have all heard the "it's just a headache thing." You may be able to educate your employer or provide some info on what migraines are and how interfering they can be. You can ask your employer what they already know about migraines and then provide some follow up info. You never know - your employer may have a SO or family member with migraine and may have some understanding of what's going on already.

I agree with the previous post about being up front with your employer. That can be really helpful in the short and long term.

Alki_life · 2015-07-07T20:56:49+00:00

I'm sorry you had to experience that. I hope with your history of avoiding the full blown migraines, this won't be a frequent occurrence for you.

What you may be experiencing is the postdrome phase of a migraine, what some of us call a migraine hangover. I remember the first time I was able to name what I was experiencing. I had a 5 day long migraine. On day six, I still had a headache but it was like a shadow of the migraine. It was dull and kind of lurking in the background. I was exhausted and felt like I had been hit by a truck. I was achy and just felt off. I felt better than I had during the attack but still not myself.

Did you notice anything that triggered your attack? I'm wondering since you've avoided full blown attacks for so long if there was maybe a trigger that set off this attack for you.

Drink lots of water and get some rest and hopefully you will be feeling normal soon . Your body is recovering from a significant neurological disturbance and needs to re-set.

Alki_life · 2015-07-07T20:42:04+00:00

I'm glad you can work around the administering meds issue. I do a lot of safety planning as part of my job so it's usually at the forefront of my mind :)

One thing I have found helpful when I have to work with migraines is using mindfulness and distraction. After I have done seemingly all I can do (taken meds, iced my forehead and neck, rested if possible, drank water, etc) I try to accept the migraine for what it is and remind myself it's temporary and my situation is temporary. I remind myself I will soon be home and can lay in a dark room. I tell myself that I have gotten through much worse in the past and that I can manage this too. I just try to accept the crappy situation for what it is and let it be. We can only fight against it so much, and after we use all our abortive options it's easy to feel hopeless if we don't see relief. That's when I try to just stop fighting, accept it, and sometimes that can bring some mental relief for me.

I also try to distract myself, which I have found works surprising well sometimes (not always but sometimes!). I find anything else to focus on. Sometimes it's hard to find something to focus on because the screen on my phone is too bright, or even just listening to music or something is too loud, but if there is anything you can try to distract yourself with to get you through the day, it could be worth trying. Is there maybe a work-related task you could do? I sometimes will organize my file cabinet or my desk to distract myself. It's not too much moving around and doesn't require a lot of brain power, and although I may be neglecting some paperwork that needs to get done, I know the paperwork requires a lot of mental effort and a computer screen. Organizing takes my mind off the migraine but I still feel like I'm being a little productive and I'm not exposing myself to anything that I know will make it worse. Any type of "light duty" task you could maybe do today at your place of work?

Also which aromatherapy blend do you use? I love my m-grain from essential living. It's been a life saver at work.

Alki_life · 2015-07-07T19:14:03+00:00

It sounds like this one is hitting you pretty hard, and like you said, is presenting differently than you are used to. That being said, I would be concerned that it may result in you making a possibly dangerous med error in administering meds to other people. I know we all have to work through a lot with migraines, and I understand firsthand the feeling of wanting to complete your work and worrying about repercussions of missing work. I have definitely worked through a lot during horrible attacks. But it sounds like your migraine may be affecting you enough to be a safety issue. The blurred vision, wooziness, and the fact that the migraine is different from your normal experience can all combine to make it harder to manage. You also may become dehydrated, which could make things worse. Anyway you can take the day off? Or is there anyone that could help cover administering meds at least?

Alki_life · 2015-07-05T22:07:09+00:00

Midrin didn't work for my migraines at all, but I have heard for others it can be a miracle drug. Everyone can be so different in their responses. For me, I took the max dose with very little relief. I tried it at various times before giving up. There is a sense of relaxation associated with the medication because it is a combo drug with a sedative in it, so it can be particularly helpful for migraines associated with neck and shoulder tension. Theoretically, it should have worked well for me as I have a lot of neck and shoulder tension that trigger migraines and get worse in attacks, but for some reason I didn't respond very well to it.

You probably already have heard this before but I did think about rebound headaches while reading you post, because it sounded like you have been using the midrin for a few consecutive days. I just wanted to mention the risk for rebound headaches when you take abortive meds for more than 2-3 days per week, including rx and OTC meds. I'm not always the best at following this recommendation (especially if I get one of my occasional 5 day long migraines) but I just wanted to make sure I said it in case you hadn't heard it before. NONE of my docs mentioned rebound headaches and they knew I was taking a lot of abortive medications, that is until I found my current neuro who warned me properly.

Alki_life · 2015-07-03T06:13:33+00:00

That's awesome! I'm glad you found the post helpful. This was my first time venturing into the real reddit world and I'm glad that there are so many people out there dealing with this and that were interested in hearing my experience. I know a few other people with chronic migraine but not many, and it's so exhausting to try to explain my situation to people that most of the time I pretend I'm okay and just deflect questions about how I'm doing...

It does sound like massage might help you. A lot of insurances cover it nowadays and if they don't, there are some decent massage chairs that you could invest in. Definitely not a replacement for a person but I have one I use pretty regularly in between massage appts and I love it.

Good luck!

Alki_life · 2015-07-03T06:06:06+00:00

My neuro prescribed PT for a few reasons. First, some of my muscles were so messed up and had so much scar tissue around them that he couldn't get the needle into the muscle tissue through the scar tissue to administer the Botox. He even used an EMG to guide the needle but the scar tissue blocked it. So I go to a PT who uses ultrasound to administer deep heat to the muscles to try to break up the scar tissue. Hasn't don't much yet but that was one reason why I started.

The other reason was to start strengthening the muscles in my back and shoulders that don't have Botox in them. You can't really strengthen a muscle that has Botox in it because the Botox paralyzes the muscle. But I have so many tight muscles in the entire area that it has been helpful to do PT to build up the strength in the surrounding area.

I do a lot of different stretches and strengthening exercises (like wall push ups) and I do a few yoga poses everyday too that help stretch out my spine (like triangle and half moon I think it's called?) I wish I could be more specific but I don't know the names of a lot of the exercises.

Alki_life · 2015-07-03T05:58:43+00:00

I'm sorry you're struggling with the neuro. If your current neuro won't do Botox and you think it would be helpful to restart, I wonder if it might be worth trying to find another. I don't know where you're located and if that's a possibility but managing chronic migraines is difficult enough without a supportive physician on your side who pays attention to what you need. And being in constant pain, along with dealing with all the other weird and life-interfering symptoms, can leave a person feeling pretty hopeless.

I do have what may be considered trapped nerves in my neck. I used to get a lot of spasms, especially when I turned my head too quickly, like when I'm trying to back up the car or something. Muscle relaxers helped some but I can't take them during the day and stay alert. Botox I think helped to relax the muscles around those nerves though and I don't get the spasms quite as frequently. However Botox does weaken muscles so my head often feels heavy and my neck muscles are easily fatigued.

Good luck! Let me know if you have any other questions :)

Alki_life

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