Any advice is appreciated

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SQ
New Member


Date Joined May 2007
Total Posts : 2
   Posted 5/9/2007 10:48 AM (GMT -6)   
I always think I'm at the end of my rope but it keeps getting worse.

I've been suffering from constant migraines or static migraines as some call it for the last 6 years I think. I can recall the day it started, I was playing a game of Ultimate Frisbee earlier and I was probably running hard and jumping for the disc (I may have landed on the ground hard a few times), this game is physically demanding. After the game I was driving a friend home, after I dropped him off I no vision out of my right eye and a headache was starting. I drove home and went to bed, the next day at work I was a zombie. All I can remember about it was I felt like crap, many people commented on how bad I looked and urged me to go to the Dr's. I soon found out the Dr's was too bus to see me so I felt I was in enough pain to visit the Hospital, plus some people thought I had a concussion. As I was signing in at the hospital they became concerned with the symptoms I described to them. Right away I was put in a wheelchair and was constantly watched until I received a bed. They told me I could have an aneurisms. So on came the CT, lumbar puncture and a crap load of blood work. about 9 hours later I'm released with the diagnosis of "Headache". I spend the next 3 days asleep in bed, no joke I didn't even go to the bathroom. I spent alot of time in the Dr's office after that, many referred me to other Dr's and so on. I did end up at a Neurologist for evaluation and treatment. It was concluded that I had I Static Migraine and the treatment was IV therapy. I was given Stemitil 2 times a day for 3 days at the day clinic, that went arise. There was a reaction to the drugs; seizure. I was take from my parents house 30 min by car to the hospital where I was receiving IV therapy to get a counter drug. From that I received a solid muscle mass in each of my calves and under my shoulder blades and came close to impacting my molars. We tried another treatment shortly after that. Decadron, again I received a gift, a heart rate of 6BPM and a blood pressure that couldn't be read. Still there was one more treatment available but it was the most risky. I decided not to proceed because of the series of events that had occurred. I did receive a MRI at one point, but nothing came of it. I even tried holistic medicine, I paid alot of money to follow the dietary plan, after 9 months of no sugar, wheat, gluten, milk, etc, I was no further ahead. I had to quit, I still practice most of the natural foods. I survived since then by dealing with the pain, not a good option but when I ran through 9 Dr's in 2 years because they said they can't help me I became discouraged. I changed careers recently and it helped. I use to work in a office on computers all day. It became stressful and 9 hours a day in front of a monitor probably didn't help. Painkillers did help, I noticed this when I had knee surgery I was prescribed T4's, the dulled the surgery pain and I was able to function normally, they didn't knock me out. Then I had my wisdom teeth removed and they had to break part of my jaw to get one of them so I was given Perkeset. Still I was able to function at work and drive still. This headache/migraine I have is making me numb to pills and painkillers though I haven't taken alot. Currently I am feeling constantly tired and I have a fog about me, can't focus on simple tasks, feels like my ears are plugged and I don't have a cold and my head feels like there is constant pressure on the back of my skull. This whole thing sucks I use to be a very outgoing and active person, now I don't do anything and I have little social contact because I never feel well. Are there any avenues I can look at? Anything will help.

SQ
New Member


Date Joined May 2007
Total Posts : 2
   Posted 5/9/2007 11:00 AM (GMT -6)   
I should also say I was sent to a cardiloigist because they thought something was wrong with my heart after a ECG and talking to the tech so I had the pleasure of a echocardiogram as well and diagnosis.....extreemly low heart rate under 50BPM.

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 5/10/2007 4:19 PM (GMT -6)   
Hi Sq,

Welcome to Healing Well. Sorry to hear of all that you have gone through and are going through!!! The best advice I can give you is to find a good Neurologist who is a Headache Specialist, a good one should not give up until they have found a way forward for you, and they should certainly not tell you there is nothing they can do!!!!!!

There may be limitations on what can be done for you, but a good Doctor should be able to find something to improve your quality of life, even if you cannot regain your former activities!!

Please let us know how you get on, take care

Ann
Co-Moderator of the Migraine/Headache Forum


CarlaWynn
New Member


Date Joined May 2007
Total Posts : 2
   Posted 5/16/2007 7:11 PM (GMT -6)   

I've suffered from migraines and head trauma since 1992 when I was in a severe auto accident.  I was 18.  I've been through everything under the sun since then and I'm still dealing with 5 different types of migraines and a head injury.  I used to be on a tyramine free diet, which helped a great deal.  It's a hard diet (not a losing weight diet) to follow for some people, but it really makes a difference with most migraines.  I gave it to my cousing who has dealt with migraines most of his life and he swears by it.  I learned about it from the Diamond Headache Clinic in Chicago (supposedly the best in the world).  People from all over the world go to this place.  I'll look up the diet and try to get back to ya, but I think it's listed on the DiamondHeadacheClinic web site.  I've also been on about every pain medicine you can think of, mostly for my head injury and some of the migraines I have.  Some are wonderful, but others suck!  I've been on everything from Fiorcet to Oxycontin (for 12 years) to Duragesic or fentanyl patches, which I am on now.  I believe in the tyramine free diet as well as ice packs on your forehead during a migraine and also using Oxygen (8mL for 15 minutes) for cluster or "ice-pick" migraine headaches.  Good Luck and I hope that you can get some relief from you migraines.

Try to keep smiling.

:-) CarlaWynn


John W
New Member


Date Joined Jun 2007
Total Posts : 1
   Posted 6/15/2007 12:22 PM (GMT -6)   
Regarding the posting on a problem with static migraines:
Allow me share my experience with the mother of all static migraines.  about 8 years ago I was hospitalized for 8 days with a migraine that would not relinquish its grip, despite multiple intravenous drug treatments, a spinal tap, and a spinal patch.  The last 2 being extreme measures due to the fact the numerous doctors and neurologists that were exposed to by case were baffled.  If it wasn't for the prescription drug Zomig, I don't know how long it would have continued.  I have never been at such a low point in my life, before or since. 
The doctors who were treating me never attempted this drug, but my wife had recalled that while we were living in Germany some years before, a doctor had prescribed this drug for recurring headaches.  This drug is manufactured by a US firm, it is not some hard to get prescription, but it is fairly costly.  
After I had given up, my wife contacted the German Doctor who had seen me some 5 or 6 years prior.  She was reminded of the name of the medication, and my Doctors agreed there was nothing to lose.  Hospitalization over. 
For the next couple years I never traveled anywhere without access to a Zomig pill.  I believe the active ingredient is called triptan, or that family of drugs.  I'm clearly not a medical professional, and I can't speak to the root cause, but I know of the monster that is a true static migraine, and that medication was a life saver to me. 
We had some issues with getting insurance to pay fairly regularly for that medication, but eventually they understood without it I could be susceptible to a recurrance, and another $15,000 hospitalization. 
I know every case is different, but when you are in that situation, all that matters is getting the monster to release its grip. 
Good luck.  Incidentally, I've been migraine free for a number of years.  I pursued some TMJ therapy not long thereafter that episode, and the root cause of my episode may or may not have been related.  You may want to investigate that also.  I was a teeth grinder, and was told I had very poor jaw alignment.  Who knew.  Again, while typically TMJ therapy is not covered, we refused to take no for an answer, and my insurance eventually came on board to cover my TMJ care. 

UMDTerp2001
Regular Member


Date Joined Sep 2006
Total Posts : 246
   Posted 6/21/2007 10:41 PM (GMT -6)   
you might check out occipital neuralgia as a possibility given its in the back of your neck> its possible you could have pinched a nerve in the neck jumping during ult frisbee

 
 
___________________________________________________________
- 29 y/o "single" male, thank god, cuz I don't know how you guys do this with a family
- UC diagnosed - April, 2006 - sudden bought of D lasting for 2 weeks with the absolute worst stomach cramps (I literally wanted to die!), no blood at first
- GI could not determine type of UC as I was too inflamed during the C-scope. He just said "you have severe UC", oh joy!
- Completed 3rd Prednisone taper on 4/13/07 - Tapered from early January through mid-April after being hospitalized from a bad flare (anemia, joint pain, I thought this must be what hell is like!). So far so good. Was third flareup.
- 7 Colazal/day, Men's GNC Multivitamin, Fish oil, Primal Defense Probiotics 2x daily (this stuff works!), Iron every other day
- Occassionally Flexeril and Vicodin for joint pain & headaches.
- If I flare again, i'll consider 6mp or Imuran

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