Newbie w/Migraines almost daily.seizures,CFS all due to PFO

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Migrainegrl
New Member


Date Joined Jul 2008
Total Posts : 8
   Posted 7/7/2008 10:57 AM (GMT -7)   
I am a 36 yr old female who has always had chronic headaches/migraines but in Oct of 07 had a total hysterectomy for Endometriosis & PCOD got a tummy tuck at the same time. Which started off more heath issues- had so many compliacations from the surgery I was like a walking medical issue. I could not go back to work until Jan. as the time progresses so did other issues I started getting almost daily migraines, headaches, so tired all the time. kidney stones, limb weakness I was a mess and seeing my normal PCP or OBGYN who did my surgery was not helping "we all have headaches", you getting older so you will have aches, They gave me pain pills and sent me on my way, they would refer me to other specialists who sent my to physical therapy (did not help) do tests but no definite answers. I ended up in the ER and they said it's a bad migraine take these go to bed. Well in March I had my first ever seizure in front of my 9 yr. old niece who called 911 I woke up with police and ambulace over me and I don't remember any of it. Another trip to the ER and this time they said; it was because I was stopping a medication or it could have been I passed out from a migraine well no answer again but it scared me and my family!! (we live in a very small town so all the drs. know each other) I went to the small medical clinic the next day you see who ever is working and has a opening well one of the drs. sent me for a MRI of the brain (Thank goodness!) well it came back abnormal but no directive more pills for my headaches. I was at a loss and losing my job since I could barely function. Waking up in the morning with brusies/bumps and not sure how I got them go again to the Dr. and nothing but anitdepressents/pain pills. My parents made me move in with them - for fear, I had another seizure this time we bypassed our small town all together and called a neurologist about 45 mins. away he got me right in and started a battery of tests that took about a month started me on zonegran, treximet, soma, fioricet. Found a PFO sent me to a Cardioligist who put on plavix since the hole is quite large. They say all my symptoms are related to the PFO and the surgery in Oct. started some embolic changes and small blood clots started passing through. Well my life now is trying to deal with migraines and headaches on a daily basis, light/noise sensitivity to eveything! being tired all the time, seizures, depression, limitations from my Drs. - lost my job, no insurance so I am applying for any program I can find to help cover perscriptions & surgery.  This month the Drs. say no work since I have stroke symptoms so often I am a high risk and already have some perm. brian injury and to top it off in our small town I guess there are pharmacy police (who knew) if you get too many perscriptions you get papers to go to court so now I have to deal with that as well. I no longer see any Drs. in my samll town just the specialists until my family cannot afford it - they are great to have to deal with all this but sometimes you have to vent to other outside what you live in day to day. I feel like have gone from a independent very social active woman to someone who just feels like she does not live in her own body any more
 
May god grant us all the strength to get through what we must!

Anonymous girl
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 7/21/2008 9:45 PM (GMT -7)   
girl you need to take a breath for a second before you give yourself a stroke from the stress. I'm 23, since age 18 I've had some surgeries for Endometriosis and since 18 also have had what I know are seizures and daily migraines. I haven't left my home to live in the world in 5 and a half years and am still waiting for doctors to fix me too. I hope we all get better soon so we can all persue our careers and be the people we really are. You never think your life is going to turn out this way do you. You see people on TV with horrible illnesses or in terrible circumstances but you never think that'll be your reality and even when it is you never think you're going to be sick as long as you are, but months go by, then years, and more years. It's sad, and God doesn't seem to be listening to your prayers but you still try to believe he has a plan. I hope we all get healthy soon, good luck.

CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 7/24/2008 5:46 AM (GMT -7)   

Hey Migrainegrl,

I am totally with you regarding your post.  However, for ease of reading and comprehension, it would help us forum members if you could take a breathe every few sentences and start a new paragraph.  It would be a big help.

I got the part that you have a PFO.  You mentioned a surgery...did you have surgery or are you going to have one?  It is fairly well-known that having a PFO is quite common in people that suffer from migraines.  There have been clinical trials regarding closing off the PFO to end the migraine episodes.  I'm not sure if the procedure has become standard practice yet, but I do know that many people are getting those holes plugged up in the clinical trials.  I was set to participate in one myself, but I couldn't see going through the surgery and possibly getting put into the "placebo" group, having to wait a year, then having to go through the procedure again.  You said you are getting blood clots, which can cause convulsions/mini-strokes.  Taking medicaton that is a blood thinner, like plavix, should help with this condition, but if you still have blood passing through your PFO, you're migraines are likely to continue.

I also understand about too few doctors in a small town.  My hometown isn't THAT small, but everybody knows everybody in the medical field.  If you go to one doctor in a group, you can forget about getting a "second" opinion.  Colleagues back each other up around here.  I'm having to go out of town for both my back pain and my migraine problems.  Currrently, I'm starting to get help for my back at the University of VA Medical Center, and I'm going to see a migraine specialist at Duke Medical Center.  My disability insurance is covering both.

Anonymous girl - I'm a 43 yr old female, and I've lived by myself since my divorce in 2002.  My daily quality of life is severely lacking, as one or more of my medical problems keep me in pain on a daily basis.  I haven't been able to work since 2003.  I had to quit a career position in 2001 because my health was too poor I could no longer work.  Since most all of my health issues are degenerative, this is pretty much all I can expect...well, hopefully I can get better pain control at some point.  My mom fluctuates between thinking I need to be in a room at an assisted living facility to thinking I'm just making too big a deal of things and I'm just lazy.  I can't win either way.  I hope your condition improves and that you can get back to living life again.

Leigh Ann mad


Basic info:
  • On Disability for: Chronic Migraines, serious Back and Knee problems (will need surgery eventually), moderate Depression, Anxiety/Panic disorder, TMJ 
  • Divorced, 43, no children
  • Surgeries: Gastric Bypass, Gallbladder Removed (followed by a week in the hospital for a Blood Clot), Impacted Kidney Stone Removed, Broken Ankle, Major Dental work(four molars pulled, multiple cavities, root canals) 
  • Current Meds: Prozac, Klonopin, Atenelol, Stadol Nasal Spray, Lortab, Trazadone, Buspar, Nexium, Tramadol, Phenergan, PROHIBITED FROM ALL NSAIDS
  • Current Problem: Internal Bleeding, possible ulcer in location of Gastric Bypass
 
"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett
 
 


Migrainegrl
New Member


Date Joined Jul 2008
Total Posts : 8
   Posted 7/24/2008 6:45 PM (GMT -7)   
I think I was just excited about finding some support, I ran on and on....I am scheduled to have the PFO closed on Aug. 5th but, of course at my last nuero appt. my blood pressure was sky high sad   So he started me on meds. and I have to follow/up w my cardio. This could post pone my surgery. NOOOO!!!
 
I have waited so long for this - another hurdle! I do take plavix and have to say I'm covered in bruises from head to toe, I barely hit something and have a bruise for over a week. My list of meds would scare someone - it scares me! but it's what I live with daily. I also had gastric bypass in 2003 and have a hiatal hernia, chronic anemnia, diverticulitious etc...
 
Beyond the hole in the heart which has caused me MAJOR issues I also have back problems as well - arthritis of lower back and hips, buldging discs in neck. limb weakness mostly on r-side, memory loss, chronic fatigue syndrome, and major depression since the Drs. said we do expect w/o the surgery you will have a embolic stroke and that is a 50-70% mortality rate with no way to tell of recovery.
 
I keep a migraine/headache chart - it's crazy 5-7 a week and headaches daily, starting to grow intolerant to some meds but they are scared to keep trying new because of my heart so.....cross your fingers for me that the 5th will go through- I am stuck in my house, it's so isolating and when you do go out people say well you look good, wouldn't know you were sick eyes ok, live in my body for 3 days or even 2 and then will talk- you know???
 

CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 7/24/2008 7:26 PM (GMT -7)   

Hey Migrainegrl,

I would love to compare medications as I also have back problems, stomach problems(as a result of my g/b), migraines, problems sleeping, anemia, bad bruising, etc...  I got rid of a hiatal hernia when I got my bypass, but I think something has gone bad in there...I have constant stomach pain now and am waiting to see the GI doc for an endoscopy.  I also have panic/anxiety disorder and moderate depression.  I basically only go out of the house for medical appointments and for club activities in my local Parrot Head Club.  My entire social life revolves around that club, and a lot of the time, I have to force myself to attend functions, but I usually feel better after I go, just for have gotten out of the house.

Let's compare notes...

Leigh Ann cool

BTW - what were you pre-gb/post-gb?


Basic info:
  • On Disability for: Chronic Migraines, serious Back and Knee problems (will need surgery eventually), moderate Depression, Anxiety/Panic disorder, TMJ, stomach problems 
  • Divorced, 43, spawn-free 
  • Surgeries: Gastric Bypass, Gallbladder Removed (followed by a week in the hospital for a Blood Clot), Impacted Kidney Stone Removed, Broken Ankle, Major Dental work(ten molars pulled, multiple cavities, root canals) 
  • Current Meds: Prozac, Klonopin, Atenelol, Stadol Nasal Spray, Lortab/Percocet, Trazadone, Buspar, Protonix, Tramadol, Visteryl, Carafate Suspension, Co-Q10, B2(Riboflavin), Remifemin(Black Cohosh)
  • PROHIBITED FROM ALL NSAIDS
  • Current Problem: Mysterious Internal GI Bleeding, possible ulcer in location of Gastric Bypass
 
"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett
 
 


Migrainegrl
New Member


Date Joined Jul 2008
Total Posts : 8
   Posted 7/24/2008 9:07 PM (GMT -7)   
You know when I started having MAJOR complications and was able to see my nuero for the first time. He was 80% convinced it was because of my GB this was before any testing. He said he has lots of patients with issues from GB that he treats.
 
Before my GB I was 298- 6 months 130 then I gained 15-20 back slowly...but then all my med. problems started about 4 years later...they started slowly backaches, headaches, depression, anxiety. Then the Endtometrios/Poly Cystic Ovarian Disease, Cysts. So Total Hysto with a tummy tuck to get rid of all the extra skin and lipo.
 
HUGE surgery did realize how much cutting was going to be done I look like a giant cross plus more! Have a Hiatal Hernia from GB, the Diverticulitus in Colon. Arthrithis in lower back and hips - looking for good rhuemy for treatment/surgery. And weirdly enough since my GB pass kidney stones - I never passed one before then. After my Oct 07 surgery - it became like a monthly thing- ODD!
 
I am currently on disability as well and taking:
Treximet or Maxalt- Migraines
Soma - for tension headaches and backaches
Zonegran - for Seizures
Fioricet/Tylenol 3 - Pain
Estradiol - Hormones
Plavix - Blood Thinner
Effexor XR - Depression
Xanax - Anxiety/Panic Attacks
Iron(Repliva) - Anemia
Lisinopril - High Blood Pressure
Ambien - Insomnia (occassionally)
OTC - Vitamins/Tums, Fiber Pills, Calcium Pills
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