soo confused! need your opinion...

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wickedcrazy
Regular Member


Date Joined Mar 2011
Total Posts : 40
   Posted 4/6/2011 9:35 PM (GMT -6)   
Hi again! Sooo, I finally got the neurologists I wanted to see from the start(he had moved out of state and is back). Yeah!! In any case, I have 5 migraine types going on at once...1)I DO have a spontaneous spinal fluid leak due to chronic migraines since age 9-10 and have the resulting pressure,nausea/light sensitivity. He has ordered a blood patch(fourth time ordered now). Now if I can get a dr. To do it, the previous three refused. If this one refuses again, I guess I will be getting a myelogram or cisternogram-yuck! 2)drug toxicity migraine-because the doctors have had me try this/try that (only 3 things) but enough to confuse my brain..,no more meds for the migraines short of zofran and naproxen. 3)hemilpegic migraine, ordered verapamil, twice a day and will hopefully make them just disappear. 4)chronic daily migraine, again verapamil should do the trick 5)C2-C3 nerve root triggered migraine, daily problem-ordered a local injection to C2-C3...NOW, how could 2 neuro's a neurosurgeon and a pain doctor not be able to get any of those right!?!? (He, the new dr proved the nerve root thing off the bat-pushed on that thing and sent me thru the roof!) My question is this..I've applied for SSI/SSD-short term and longterm disability-the process has been started and chart in review now. Do I seek employment in the next week or two? Or wait, give my poor body a break and work part time when less fatigued/etc (after proper treatments)? And then work up to a fulltime status and drop the ssi/ssd? I would make more per month on ssi then my old job...and they allow yÓu to have. $1000 per month income outside of your ssi, hence the start part time first. I'm so afraid to go back to work as a nurse and lose my job again and/or have very short job stents here and there-damages my resume severly...any opinions? Thanks! (Sorry for the length..) Amy

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 4/7/2011 12:46 AM (GMT -6)   
I personally would leave it alone for now. If the govt has a shut down, it will affect the ss system I would rest. Are you completely migraine free? Do you sleep well at night. I know how the migraine thing goes.. oh how i do...though i have an auto immune disease I still get migraines in flares... I had a complete hysterectomy in my 30s ovaries and all mine were heavily related to hormonal changes. i went to mayo clinic before the hysterectomy they put me on a preventative it was a type of anti seizure med. I started at 25 mg i took before bed because it made me tired and worked my way up to 200 mg. it does help the severity and longevity of the headache. one of the nice side effects is somehow it is actually an appetite suppressant as well, or a very common side effect. I feel for you. Hope you get answers soon.
i also went to a pain clinic and learned a lot about biofeedback and i learned relaxing techniques that i thought was insane honestly, but the word relax stresses me out... but i learned some things that helped me recognize the onset and how to calm my type A personality into not over thinking it or almost panicking b4 it was necessary. So i could keep my wits about me when i felt my head would explode. i also did physical therapy on my neck. I now get massages frequently not just for migraines.. i have lupus but both PT and massage are extremely beneficial... i am sure you have been down that road as well. I have also tried acupuncture.. it is relaxing and somewhat affective but my migraines i am puking and dizzy... so i had to go like asap, and i found it to be costly. I hope some of this helps.

Please no that you are not alone. Try not to over think it. lol. a nurse trying not to over think it ... I am a dental hygienist...and nurses and dental hygienist well we are a weird breed of people... but a great breed. lol.. but you are in a category where you know too much... it is almost better to be oblivious. i saw one of my drs today and he said something about knowing a lot about pharmacology and how drugs work. and then he said oh you learned that in college. and i laughed i said I did but i learned more from being ill for the past 19 years and being my own patient advocate. Idk if that is a good thing or bad... a double edge sword.

With healing thoughts and days with less pain. ps.my favorite home remedy ice pack on back of neck or forehead.

Huge triggers for me... any processed meat.. anything with Sodium nitrate in it, any sugar substitutes except stevia, aspartane is straight from the devil i am sure of it lol bananas can be triggers for some people. dairy can trigger for some. caffine can trigger for some or help for some, a lot of this just goes with eliminating it from you r diet for a full three weeks no improvement add it back in and trytry again... I am sure on the web you can find a list of common triggers. couldn't hurt?

take care.. rest... learn to relax that is a hard thing to do for some people.... Diana

wickedcrazy
Regular Member


Date Joined Mar 2011
Total Posts : 40
   Posted 4/7/2011 9:30 PM (GMT -6)   
Hi Diana! We could be sisters girl! Lol I agree that us as medical people are definitely of our own kind...lol, not a good kind sometimes either-have to wait for our body to scream "stop" before we do! As far as sisters, I have fibro and have had a partial hyst at age 32 and begged them to take ovaries out! I love acupuncture! (When I can afford it..)Also love chiro stuff, but not yet right now..too much going on. Finally got a blood patch today and wow!! Most of everything is gone!!! Yeah!! about darn time!! I hope this finds you doing well! Thanks for the words of encouragement! (They were much needed!) I'll be feeling a 100% in no time now!! Thanks again! Amy jo

tiffany0212
New Member


Date Joined May 2011
Total Posts : 1
   Posted 5/15/2011 9:52 PM (GMT -6)   
Hi Amy(wickedcrazy)! I don't even know if this will get to you and i'm not sure how to send a message to you, lol...so i just had to post on here.

My neuro thought maybe i had a spontaneous leak and so i had googled around trying to find info on it. I couldn't find anything that had my symptoms. Until google pulled up this forum with your response to someone that thought they had sinus issues/pain bending over.

I wanted to ask you a couple questions since idk who else to ask. No one understand what i'm going through. They cannot figure out what is causing my headaches.

The doctor first said csf leak, then when i came back in with my previous neuro's test he said he wanted to rule out anurysm(he no longer though leak). they did that last week. i had 2 MRA's done on tuesday. everything clear. just a little plaque in my coratid arterie, which they will double check in a few months.

i still think i have a csf leak. Oh my symptoms! DUH! Sorry. Anytime i bend over my head fills like it is filling up with fluid/blood. like when you hang upside down too long. Then it starts this horrible pounding like my heart is going to beat out of my head. It also does this when i run, jump, etc. i can't even bend over to put my kids clothes on. Then the headache lasts for hours

I ran a half marathon last year, idk if that could have somehow caused it? This has been going on for a long time, this month will be 1 year.

They have made me quit running and told me not to bend over. Easy for them to say.

Anyways i just wanted to pick your brain since i had never heard anyone else say that these could be symptoms.

Oh and my doc said last week that if i did have a csf leak i couldn't sit in a chair and talk to him, i would be in too much pain. My symptoms are like reversed of anyone else with this.i am fine as long as i am upright. idk why i belive this is what is going on though.

i have an appt. in a few weeks and i am going to request a lumbar puncture. I didn't know if it would show pressure since i only have the pain when i bend over.

Sometimes i get congested when i bend over, but one neuro said since it only happens sometimes it is probably happening when i am having sinus problems.

Sorry for rambling.

If this makes it to you, thank you for any thoughts you can offer.

wickedcrazy
Regular Member


Date Joined Mar 2011
Total Posts : 40
   Posted 5/23/2011 10:22 PM (GMT -6)   
Tiffany, I hope this finds you!! Sorry, for length of time to reply-been very sick lately-please, send me an email at amysnoodlehead@yahoo.com and I'll send you my phone number.yes, you can have a leak and yes you need a spinal tap to check you r pressure!! Take care, amy

HemiL
Regular Member


Date Joined Jun 2010
Total Posts : 33
   Posted 5/25/2011 1:37 PM (GMT -6)   
Wickedcrazy, you’re back! I was wondering about you. I’m sorry you haven’t been well. Have the doctors finally fixed that spinal leak? I remember you had to go back to have another blood patch placed because it reopened. Are you still getting daily injections or have they stopped those? So are the final diagnoses the ones you stated in the original post 1. hemiplegic migraine 2. chronic daily migraine ( I assume these are related to hemiplegic migraines or are they completely different?) and C2-C3 nerve root triggered migraines? What meds do they have you taking now, because I remember you had that big problem with Paxil and an interaction with I forget which other medication, I think it was Depakote.( I know that’s an understatement). How’s your baby? I hope everything is well with your loved ones.
Take care,

HemiL

wickedcrazy
Regular Member


Date Joined Mar 2011
Total Posts : 40
   Posted 5/25/2011 5:36 PM (GMT -6)   
Hi Hemil, good to hear from you! Yeah, I'm still here ...need to do a new post, ben kinda crazy-finally getting to the bottom of this stuff. I got to see the neurologist I saw 15 yrs ago who moved away, and moved back -yeah!!! He's sooo smart! He automatically knew what was wrong. 1)spinal leak migraine-blood patch the next day-kinda worked, refused to do another one... 2)hemiplegic migraine-verapamil (blood pressure med) twice a day and they have diminished from daily to every 3-4 days with only 20 minutes of speech difficulty (was the whole deal, every day) 3) C2-C3 nerve root block migraine- got two injections on the left-worked each for 5 days, doing physical therapy now 3 times a week for a month and love it! -so, it's majorily decreased so far. 4) daily migraine- should and did go away when some of the others stopped-yeah!!! 5) drug reaction - not even allowed excedrin-it's been friggin miserable, but...if it leads to a good result, I'll do anything! However, his theory is that now I have a "psuedotumor" and it caused the spinal leak to start with and the terrible pressures in my head-put me on a glaucoma med to decrease spinal fluid production and act as a diuretic-it worked!!! No pressure for 5 days now!! (Only 4-5 hours of sleep each night vbecause it makes me violently ill, but I just got changed to topamax again...) Now I get to see how it works...paxil is gone, in a new class of antidepressant with effexor. Still having some muscle weakness (mild) and tremors (mild) - not sure I don't have a connective tissue disorder too boot-but I see the dr again on the 2nd and we can address that issue now. I am doing 80% better!!! And am able to sleep with a pillow under my head and work around the house for 4 hours before I start shaking. I am a very stubborn and determined person and this will not get the best of me, no matter where/how/why I end up. Filed for unemployment-applying for jobs and blowing interviews (heehee). Still have application for ssi in process. I figure when/if I can tolerate 8 hours around the house, then and only then will I actually apply for a job I really want to do. My daughter is wonderful and so excited that I am feeling better. She graduated kindergarten!! She's very excited to spend the summer with me. I figure I'll do day camps here with 2-r of her friends: movie/pj/snack camp, art camp, camping fishing camp, cooking camp, fashion show camp, reading camp, water camp..each 2-3 days and then I can toss her off to those parents in return on other days (big smile)!! How are you and yours? Hope this finds them all well!! Keep in touch!! Amy jo
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