Daily headache for over a year with facial numbness but doc thinks it's "all in my head"

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ErinSmith
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Date Joined Aug 2013
Total Posts : 12
   Posted 8/18/2013 9:24 AM (GMT -6)   
No pun intended

Hi I'm new to the board and I'm desperate enough to reach out to strangers for advice, which is not at all like me.

I've had the "million dollar" work up and so far only minimal things have been found on my CT and MRI scans - so my neurologist (who is new to the hospital I go to - I'm a military dependent so I'm kinda "stuck" with him for now) requested me to be seen "out in town" and I have a packet from him to take to the doctor that I'm going to see - well of course curiosity killed the cat and I had to look through it, I saw all of the CT's and MRI's that did of my head (ok only 2) and I also saw a note he wrote to the outside doctor saying that in his opinion that it's "somatic disease" which pretty much is "it's all in my head" after reading this I have to say I felt/feel rather dejected and upset as the last year has been hell. He has me on topomax and propanol and my PCM just put me on antidepressants because she feels that I'm "slightly" depressed. Here's the thing - I'm not one to pop pills (I don't like taking meds actually) so frankly I'd rather quit taking all these pills quite honestly.

I also have just recently been diagnosed with Hasimoto's Thyrodosis (which I don't even know if that can have anything to do to cause migraines to be worse or not - but according to my neurologist it doesn't). I've had migraines my whole life - even as a child I had headaches but only occasionally. The only time I never suffered with migraines was when I was pregnant. I keep a diary. I eat well and when I can I exercise.

What I want to know is - have any of you had this happen to you? Have you had your doctor pretty much write you off as "faking it" or calling you a hypochondriac? And if so - what do you do? I'm certainly NOT faking it, and I certainly am NOT a hypochondriac. I just want answers to why I've had a headache for over a year and why my freaking face is numb on one side - that's all really - is that too much to ask without being judged?

Thank you for listening and I'm sorry it's so long - I know a lot of words make peoples eyes hurt
Erin

blanquitazz
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Date Joined Sep 2013
Total Posts : 12
   Posted 10/17/2013 12:34 PM (GMT -6)   
First off, sorry to hear you are going through all this & your doctor isn't much help.
 
I've been suffering from migraines for yrs, it was usually 1 every 2months that would last 2days, other than head pain and pounding that's all the effects I had.
 
Lately, though for about 2 months now I notice when a migraine is coming on a few days earlier I'll get the fuzzy vision, facial numbness (slight heaviness) only on the left side, which scared the crap outta me the first time cause obviously I thought I was having a stroke. My eyelid kinda droops also. So far all I take is extra strength Tylenol.
 
My doctor has made an appointment for me with a  neurologist which is coming up on Nov 5th, i'm so scared as to what will be found. When i'm not suffering from migraine symptoms I feel fairly normal, i'm 31 yrs old mother of a 7yr old, iron difficiency (my only known medical problem). I really don't know what triggers my migraines or why they are becoming stronger & with more effects than before. Its definitely scary & I feel your pain.
 
May we all find something that works for us & takes this pain away. I hate this feeling (don't we all)!
xoxo sad

ErinSmith
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Date Joined Aug 2013
Total Posts : 12
   Posted 10/17/2013 1:04 PM (GMT -6)   
Hey there thanks for the reply - I ended up seeing a group of doctors at a large university here and in fact I have had chronic migraine literally for OVER a year - yes one than NEVER let up - daily - they were amazed I was as "functional" as I was - ended up that my neurologist pretty much had me on the lowest dose of tomopax as possible and didn't even bother to raise the dosage - I'm on the "adult" dose now and doing so much better - no more facial numbness daily which is wonderful - no more debilitating headaches daily and I actually have COLOR in my face! I can function again. I'm on imitrex 100mg when they do get really bad. My neuro had me on propanolol as well which was making me depressed so the university doctors took me off of that as well as the wellbutrin - they felt that onset of Hashimoto's has exacerbated my migraines and somehow changed their timing and how my body reacts to them....I guess having an autoimmune disorder really does a number on your body....

Have your doc check your thyroid levels - you never know - it's crazy how a thyroid changes so much - even how your body reacts to allergic reactions - mine are even more severe now - my shellfish allergy was NOT as bad as it is now - now I have to have an epi pen at the ready for even minor cross contamination or I'm in serious trouble.

I hope you find your answers and that it doesn't take as long as mine and as many doctors as mine did.

HUGS

blanquitazz
New Member


Date Joined Sep 2013
Total Posts : 12
   Posted 10/17/2013 1:49 PM (GMT -6)   
Im glad to hear ur doing better, a step in the right direction, thats amazing! Very encouraging & i hope everything only gets better from here :)

Keep in touch please & i'll let u know how my appointment goes

Xoxo

ErinSmith
New Member


Date Joined Aug 2013
Total Posts : 12
   Posted 10/17/2013 3:06 PM (GMT -6)   
I will - and thank you - please check that thyroid - mine was just randomly found because my neurologist wanted a CT of my neck and BAM my thyroid just happened to be in the pictures too - and he didn't even tell me something was wrong with it my regular PCM did she ordered an ultrasound and found it to be "odd" then ordered blood tests (I'm a human pin cushion now) and lo and behold I have an autoimmune disease and that will actually make your migraine change - and can change them for the worse (which is NO fun - as we BOTH know)....stay strong -don't lose hope - do your RESEARCH and if you don't get the answers you seek - seek them elsewhere - university hospitals (large universities) are good places to get answers - one of my sorority sisters found answers at Georgetown - she had to go out of state to get answers and that is what she did! I got mine at UVA - you can get yours too and I'll be here for you too

HUGS xoxo

VivianWillis
New Member


Date Joined Sep 2013
Total Posts : 2
   Posted 10/18/2013 7:43 PM (GMT -6)   
For migraines sometimes it's better to go to a migraine specialist rather than a neuro after you have had everything checked out. Someone suggested looking at the dosage. You could be on the right med but on too low a dose. My son is taking Verapamil and now we are adding Topamax to see if the combination will be more effective. Do your own research and look up homeopathic remedies: butterbur and magnesium. Lastly, try looking up hemiplegic migraines, because of the one sided numbness. Good luck as we all experiment what works best, everyone is unique.

ErinSmith
New Member


Date Joined Aug 2013
Total Posts : 12
   Posted 10/18/2013 9:23 PM (GMT -6)   
Thank you so much Vivian - yeah my neuro is "supposed" to be a migraine specialist. I have tried butterbur and unfortunately I'm allergic to magnesium :-( and the butterbur doesn't work for me, I tried it for a while...to no affect. My topomax was finally raised and it actually is helping although the numbness creeps in every so often still - I'm going to do some research thanks to you :-)

dakadare
New Member


Date Joined Oct 2013
Total Posts : 1
   Posted 10/19/2013 5:36 PM (GMT -6)   
In your head or not, to you the pain is real and something needs to be done about it. I have found that meditation and yoga works for me.

www.benefitsofmeditation.net

www.yogastretches.net

ErinSmith
New Member


Date Joined Aug 2013
Total Posts : 12
   Posted 10/19/2013 5:53 PM (GMT -6)   
I am a HUGE believer in meditation - I have used it to try to over come any pain I have felt and it has helped somewhat until I've literally passed out from pain (yes that has happened many times - although no one (doctors) seem to understand why) because I have a "high threshold" for pain due to being able to meditate and breathe properly through bouts of pain -I've had all my children without any kind of medication or pain killers - but my body can only handle so much and I think it's threshold has been breached. I do take my time to rest my mind & body. I also am a yoga advocate - one of my sorority sisters is a certified yoga instructor, I took multiple yoga and pilates classes in college and l learned the poses and stretches and use them often - I enjoy the feel of my body as it stretches and relaxes. Unfortunately the pounding of my head and the near vomiting or in some cases complete numbness of one side of my body does hinder any enjoyment of any extended yoga time

blanquitazz
New Member


Date Joined Sep 2013
Total Posts : 12
   Posted 11/8/2013 12:35 PM (GMT -6)   
Hi there ErinSmith,

I was just wondering how you were doing? Any new changes?

I had my neuro apptmnt on the 5th and just basically asked me about all my migraines & symptoms etc.. I told him I had been taking Tylenol and he suggested that when I feel another migraine coming (left side numbness) that I should try taking 2 Tylenols asap instead of 1 & see if theres a difference.
If there is no change he gave me his personal card & told me I'm welcome back anytime to suggest a new remedy and do some tests. I appreciate the fact he didn't just try to drug me up right off the bat like most doctors. He also told me that he could arrange to get my thyroid checked upon my next visit if nothing changes. I want to thank you for recommending that and bringing it to my attention :)

Currently I'm having numbness again and some neck stiffness so I'm about to say a prayer & take 2 Tylenols!

Pls let me know how u are doing, hope all is well luv xoxo

ErinSmith
New Member


Date Joined Aug 2013
Total Posts : 12
   Posted 11/8/2013 1:07 PM (GMT -6)   
I'm so glad you have found a neuro that will actually LISTEN to you and not drug you up :-) - I'm doing "OK" my vascular surgeon has me going to physical therapy for neurogenic thoracic outlet syndrome (and according to my PT she said PT pretty much won't help but heck it will strengthen my muscles so that will do "some" good) -

I think my body has become used to the dosage of my topomax as the left side numbness has increased as of late - although conflicting reports with my vascular surgeon (he seems to think I may have suffered a TIA at one point in time that my neuro and the entire ER staff didn't catch - NICE) but he doesn't want to actually put it down as one since it was so long ago and given the fact that the ER staff really screwed the pooch when I came in and didn't properly document it he can't put it down - but he wants me to watch for symptoms of them now (I do have some blockage etc but since I don't smoke, don't drink, don't have high cholesterol they have NO clue why I have any blockage - yippy MORE tests)

OH I got the mirena to help try to regulate my periods since I get such intense migraines around them - thus far I can't speak on how it's going but once my period happens I can let you know if I get an intense migraine - I had my normal cycle last month and did have a lovely migraine - so yeah - experiment not working thus far....we shall continue.

I'm glad you are getting your thyroid tested. I couldn't believe how much it controls our bodies - mine is still not at the point of being put on meds (I am guessing civilian doctors have different standards than military doctors I don't know)...I've been loosing lots of hair and now gaining wonderful amounts of weight overnight - it's like the weight fairy comes to visit or something. My bath the other night ended not in relaxation but in utter terror due to the amount of hair that fell out - hubby had to pretty much come get me - he's dealt with hair loss (he went through chemo) and it sure looked like his bath water at one point except my hair is VERY long...unfortunately I have to "suffer" until certain levels get to a certain point then YAY magically I can be placed on thyroid meds and all is well - and supposedly energy, headaches, hair loss, everything regulates back to "normal" - I do hope so because I start my Masters Degree in January and frankly I won't have time to be like I am right now....

I hope you get your answers soon too - feel better soon lots of HUGS
E
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