I'm new

[CorinaCrazed]

I don't really have the energy to ask  questions right now, I finally think I can fall asleep finally (before 6 am, Yay), but I am really glad I found this place. Sorry If I don't get thinks right, my brain is so foggy all the time but worse when I am tired.

[StormyRenee]

Hi Corina,

Wow..We have alot of the same issues....

I have a few questions for you...
What types of migraines were you diagnosed with?
Have you had both Brain and Spinal scans?
Have you seen a Rheumatologist?
What reation did you have to the Triptans?

I too have every symptom of hyperthyroidism and my father actually has it .But I too tested normal. I also have been tested for Addisons and other Adrenal/pituitary diseases and ofcourse all normal.I have Paresthesia and Nystagmus.I have gotten a handle on the fatigue issue.I have been told by both my Rheumy and Neuro that I definatly flare and remitt they just dont know from what yet.But I do have about 15 spots/lesions in my brain...
But I recieved a diagnosis through exclusion. I was dx with Migraine and Migraine Varients. Hemiplegic,Acephalgic  migraines to be specific.My migraines mimic stroke with brutal aura and actual motor weakness.Sometimes the motor skills issues last long after the migraine has stopped. I find it interesting that you have issues with the Triptans. I am unable to take Triptans because of the types of migraines I have. They are contraindicated for Hemiplegic migraines.
I am also Vitamin D deficient. I have been tanning and have noticed a decrease in paresthsia...
I was having all sorts of weird eye issues . I went to the eye doc and found out I actually did have eye problems. I have an Astigmatism and chronic dry eye. I also had vision issues and needed glasses. The glasses have helped alot.

I know exactly how you feel and it is very frustrating.....
Please Take Care, Theresa

[silkcut]

Hi Corina

eee, that all sounds almost unbearable...

I'm wondering when these migraines started? Have you always had them or was the onset sudden or gradual as you got older?

The medical world seems flummoxed by refractory migraine, they just don't know how to treat it effectively.My tuppence worth is that maybe it's not migraine but another condition altogether. For example, nystagmus (eye oscillation) is not classed as a symptom of or normally associated with migraine - see http://www.nystagmus.co.uk/nystagmus/facts/index.htm#Causes. Also cramping and twitching are not listed as migraine symptoms.

If you were in the UK (where I am), nowadays I'd question the 'normal' reports of the scans you've had. Here patients are often told their scans are normal when there may be e.g. significant white matter lesions or other signs of poorly defined disease.

Also, have you had neck scans? There's a body of research (e.g. see http://www.ncbi.nlm.nih.gov/pubmed/16202963) that strongly suggests misdiagnosis of migraine: on deeper investigation patients are found to have chronic cervicogenic headaches, that is headaches as a result of 'neurovascular, neuropathic, myofascial, and cervicogenic' contributors involving the occipital nerves and the neck.

Many of the symptoms/signs you write about are familiar to the rest of us Limbolanders and for us they're caused by a range of other things.

As well, just thought - did you have some infection or inflammation back when your bloods returned v low cortisol and thyroid?  The cortisol business just made me think of Addison's disease and allied conditions. Has anyone thought of this? What about lupus (of the SLE variety)?

Don't want to complicate things or add to your confusion, but it sounds like you really need to go wider on this. I know it's such a faf to hunt down yet another specialist, but there are migraine and cervical spine specialists out there (most general neurologists are not so knowledgeable about migraine,oddly enough...)

Thanks for posting - it's not right that you should be left to suffer this way.

bestest
sammxxx

[CorinaCrazed]

I am finally feeling a little more energetic, but now my left hand is all crampy and so I have to be careful not to type too much. It all started with MIgraines, but lucky me I didn't just get them a few times a month, they quickly became nearly everyday, and now they are everyday. I have tried almost every medication, and none worked, some made it worse, and better yet some, like Imitrex, nearly killed me. It is a Triptan, and I am allergic to every Triptan class drug I have tried. After seeing three Nuerologists, I was told all I can do is take pain medication. (This was before the other symptoms) I have had CAT scans and MRI's, but I was told those were normal. Now I have Painful cramping (especially in my hands), and crazy random sensations ALL OVER. I have times where my eyes move back and forth rapidly for just a few seconds, but it makes me dizzy for hours. It hurts when I first step onto my feet to walk for the first few steps, then it goes away. My ears will ring, or I will hear a sound like a bee is buzzing in my ear. I will have sensations like I am being pinched, or a bug is crawling on me, or  I am being poked with a needle, I makes me smack myself, or rub the area, but that doesn't make it stop. Sometimes my head twitches to the side and I can't stop it. I makes you wonder if you are going crazy. I also have nearly every symptom of hypothyroidism, except that my TSH and other blood tests are normal (the new normal, below 3.0, for those who know what I mean.). My Fatigue is Severe, not the worst I have heard about, but really bad. It varies between I can only get out of bed to go to the bathroom, and even that is hard, to on rare occasion being able to go out to dinner, but total time from getting up to getting back in bed must only be a few hours, and that is with medication. I manage to stay up, if not out of bed for the entire time, for about 6 to 8 hours on better days, thanks to  Provigil 200mg. I have been diagnosed with Fibromyalgia, but it does not explain most of my sypmtoms. My Doctor considered adding a diagnosis of Chronic Fatigue Syndrome, but my fatigue is slowly getting worse, and I have a lot of neurological symptoms too. So he thinks it is all something else, despite having had enough blood drawn for tests to kill me, we still don't have an answer. In the past I have had a very few tests come up abnormal, but not in a way that was concurrent with my symptoms. Like they tested my Cortisol level, and re-tested a few times, because it came up the complete opposite of what you would expect. With my fatigue and rapid wieght gain you would expect it to be high. Normal is  5-23, and he expected it to be above 23, so when my level came up under 1 every time, 0.02, he was really confused. They never did anything about it, and when they re-tested me a year later, it was normal. I had an abnormal T4 test at the same time, and it also had returned to normal. We are once again testing everything my doctor, or I can think of. So far so good, or bad, depends on how you want to look at it. I have the feeling that you all know what I mean, a diagnosis isn't going to make me sick, I am already there, I just want to know why. It would really help with the whole "She's just making it up" or "She's just Crazy" thing too! My doctor is getting older, he only comes in two days a week, one of which is only on alternating weeks. He has a lot of patients because he deals with the people that have something that isn't easy to diagnose, and have crappy insurance, we live in a small town, so options are limited. I am too darn tired to travel to see another Doctor who is just going to tell me that there is nothing wrong/I take to much medicine/It must be psychological. But I know my Dr. isn't going to work forever, and as it is he hasn't found anything, but at least he believes me... Thanks for being patient, especially if you made it through the whole thing, There are some specifics, and several symptoms I didn't put in, but I am in too much pain to go any further. Thanks Again, Bye for now.

[silkcut]

We know, we know...;-)

We'll look forward to when you're feeling a tad more energetic...

Nap as much as you need and go easy on yourself.

bestest
samxx

[CorinaCrazed]

Oh, I see, okay, I've got it figured out. Just wanted to thank you all, I am SO glad I found this place! I will get on here and tell you all of my crazy symptoms when I feel up to it. Right now, I need a nap, again, *sigh* Talk to you all later. Thanks for understanding! : )

[CorinaCrazed]

Trying to figure out how to post, and where it will end up. Can I just post for all to see, not just to one person?

[Charley123]

Welcome!  Personally I wouldn't know what to do without the input of all these wonderful people here.  and..ditto to all of the above, hugs, Charley

[StormyRenee]

Hello & Welcome!

You will not find a nicer and more supportive bunch!
Please feel free to ask,share or vent about  anything you like..

Please Take care, Theresa

[Linann]

Hi from across the pond in UK !
I only joined a few months ago but have been amazed by the support offered by all the lovely people on here.

Our medical services our very different over here but, one thing we all share is a desire to know why we are unwell !

Happy to help if I can, so keep in touch when you feel up to it.

Love from Lin x

[Mike_Shuswap]

Welcome!

You've found a great place! Lots of caring people with good advice.

Share whatever you feel comfortable sharing when you're feeling up to it.

Take care and rest

Mike

[silkcut]

Hello and welcome CC

I'm sorry you've had to find Limboland - but glad you've arrived anyway , if that makes sense!

The fatiguey business is so debilitating isn't it? When you can, perhaps you'd like to tell us more about your symptoms?

bestest
Samxx