Welcome, Coffeegirl....NT is a great place to visit, chat, and learn from the others...some wonderful people here, who are kind, compassionate, and freakin' fun!!

I must ask, since I am in limbo also...can you describe how your headaches feel? I can't get rid of this headache I've had off and on for about 3 wks, the same time that some of my sxs returned.
Thanks for any info you can share...and again, welcome!

I can tell you what mine feel like, if it's any help.

I don't know if they're actual true 'headaches'. Basically... they sit in my left temple, and they rarely let up. It's awful. They can progress into a burning pain that runs from the top of my scalp on the left, down to my left eye. Sometimes into my cheek as well. Just depends.

Clonazepam has been the only medication I can tolerate that 'breaks' through the burning of these (I take a small amount of Clonazepam). I had terrible side effects so far on other options, such as antidepressants and anticonvulsants that are traditionally used to treat this type of pain.

As of today, I have a bit of burning, in fact, some slight little sharp twinges of 'electrical' pain in my cheeks off and on, but the headache is another matter. It's sitting up there brewing. Right now it's dull pain in the left temple/into the cheek, but I can feel slight burning at the top of my head starting up.

I try to avoid medications (over the counter or otherwise) for as long as possible when I get these headaches, but as you mentioned, these can last for weeks on end, and each day can be different. I also don't truly believe them to be headache or migraine... more MS having it's sensory fun on me

Actually sounds as if your headaches are connected to trigeminal neuralgia...mine are just pressure, as if I'm wearing a bike helmet that's too tight.

Actually, I 110% agree with you. Sadly, my GP flat out refuses to believe that mine are TN. My neuro is also on the side of believing it to be migraine alone.

Sigh.

I know what you mean about the helmet. I get those as well, just very infrequently.. but they're not fun what so ever.

CoffeeGirl,
I was first told I might have ms in Jan '03. I still do not have either a dx or ruled ms completely out - my neuro still thinks it's possible.

And I'm not telling you that to scare you, but so that you know that I get where you are. I was there. I was later dx'd with spinal issues C spine and syringomyelia in the T spine. Neither of those explained half my symptoms.

I was totally freaked for a long time. I cried, I raged, I got depressed. There is nothing wrong with you if you have crazy mixed up emotions, going through all of this, okay? Who wouldn't?

One day I looked at myself and decided I had not cried the first 40 years of my life, and I wasn't gonna spend the next 40 crying either.



I was gonna get up and do what I could today - and it was not as much as I used to be able to do - not 1/10 as much. But I'd do it.

I may have to do it not knowing why it hurts, why my parts don't work, but I am not going to waste my life waiting for that answer - the diagnosis. Thank goodness I did that, moved on. I would still be sitting on the couch waiting. Man would my butt be sore by now.



I still get mad, still cry at times. I still get depressed because I want to go garden for 10 hours like I used to but I can't.

~sigh~

It is what it is, and all things for a reason.

Thing is, I have learned a lot. For every thing I have lost, there are five things I have gained. And that is no joke girlfriend.

I never would have been slow enough to watch a butterfly before. And now, I know them all by name. I cannot work, but I can feed the hummingbirds, and that is priceless.

This is a hard time, I know, we all know. But you are stronger than you realize. You will find you way, the strentgh you use to fight your other battles, you'll fight this one with too. And there will be a time when you'll make peace, before or after the figure out what's wrong with you.


and - believe it or not - you may even forgive the dummies who did not believe you along the way.

Debbie- The migraines that I have usually put me on the couch for the day, and make me a useless person. I become very tired, the pain eases in slowly at first, which is when I know it is coming on, then-boom, it happens all at once, the pain is intense and it is very unbearable. Sometimes I wake up with intense pain and it is so bad I'm not able to get out of bed. The pain location for me is from the top of my head to the forehead down to the temples and it throbs constantly. The neuro put me on a migraine medication but I cant' remember the name of it. It starts with an 'A' and if I take it when the migraine begins it basically stops the migraine all togetehr. I also take 150 mgs of Topamax too for migraines/bpd. I'm sorry that your migraines are bothersome. They can be overwhelming at times when they happen and sometimes just more than imaginable due to the pain. Do you get sick with your migraines? My sister gets nauseated with her migraines.

Brainbegone-Thank you for your comforting words and sharing your story. It sounds like you have been throgh a lot. I'm sorry that you have been through so much. It appears many have been through a lot of ups/downs to get some kind of a dx here or for another form of dx. Frustrating.

you mad some great points about how to look at things in life. Thank you for giving a different perspective with the smallest things in life- that we all take forgranted. Yesterday I was sitting in my kitchen and noticed a squirrel on our deck. Normally I wouldn't think anything of it but I noticed how pretty the animal was and how much I'd love to share that beauty with my family- so I grabbed the camera and snapped some pictures of the squirrel before it ran off. Amazingly, that little incident was theh highlight of my day!! Silly, yes, but it made me appreciate the beauty in nature and life. So, I understand what you are talking about.

Thank you all for your encouragement.

Coffeegirl

Migraines and 24/7 headaches was why I started all this testing in the 1st place. I've tried about a dozen meds for that all told. I am on topamax, with Relpax for break through. I did a migraine study with the area authority on the subject, (got paid $25 lol) and did the whole food thing - gave up all the known food triggers, eliminated chemicles to see if there were sensitivities there, too.

Turned out I am weather sensitive with a couple of foods as secondary triggers (wine mostly).

Also they checked my blood pressure - which is low like the rest of my family - and other vascular stuff like Factor II, Brain MRA (to check vascular system there) and got me off BC pills to lower my stroke risk.

I started taking magnesium supplements which are supposed to support heart and vascular health and my daily headaches were greatly reduced. I take fish oil too. Between the supplements and topamax, I'm down from about 3 migraines a week to about one per month which is awesome.

I'm not saying what I do will work for anyone else, I'm just saying sometimes there is more to treating them than just what your doc knows or does for you. There are really great migraine sites now, and the info is worth checking out. I would not have been this successful in treating my migraines without knowing what to ask my docs to do for me or what to do for myself.

I wish all you migraine sufferers the best of luck with this. H/a is the pits!

HUGSSSSSSSSSSSS
I have been similar sxs...well the tingling, and painful tingling..numbness stuff...balance issues, and some of your others ...sorry and hugsss

hoping you have great luck from your testing....as I have done this limbo for 8+ years....but keep the chin up..and keep asking your dr for ways to alleviate some sxs at least....sometimes neurontin or lyrica can help with the tingling part of that numbness...and to avoid too hot of a shower....and certain things to avoid...I try to exercise like walking or yoga...to not overheat ..as I hate the sxs I get when body overheated...stay strong and good luck,sarah

Wow. What an awesome post! Magnesium I have in my cupboard actually, and I was told to take this last year as a preventative. I will again, try it that is, provided there are no serious side effects of it. Is magnesium completely ok to go ahead with? I've heard mixed reactions, but you get to a point where 1 doctor says yes, 1 says no, and then it's 50/50 and it's basically your choice as the patient.

I'm definitely weather sensitive, and I'm not sure if I have food triggers... I already do the fish oil.

Sorry not intending to hijack the thread! I just wanted to highlight the magnesium subject with headaches. That's pretty awesome to hear from someone who had good results

All I can say about mag is the only side effect was some looser stool. (sorry TMI lol) But that was not really a problem as some meds I was on made me kinda constipated, so I needed the help.

If it is a prob for you, try taking the mag every other day. I do not believe it builds up where it can hurt you, I'm sure I read excess is released through urine.

My PCP is well-read on supps and fully supports my use of the ones I take - a lot of docs just do not research them, they only advise you to use meds.

My doc uses supps and green tea himself (he's a cardiologist ) - he is approx 80 yrs old and still working, healthy, getting around fine, so I listen to what he says.