Hello-Please Help Any Advice will be appreciated

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Brooke2244
New Member


Date Joined Jan 2009
Total Posts : 4
   Posted 1/31/2009 9:26 PM (GMT -6)   
Hello,
I am new to this forum and after many attempts at various medicine I am wondering what helps for others. I have been suffering with chronic migraines for 10 years now- and they have only gotten worse. I have been to many doctors/ neurologists and have had many trips to the hospital. I have had numerous MRI's and bloodwork done regularly and every medication has seemed to fail me. I was tested for many viruses and all have come back negative (thank god). I get severe migraines about 3 times a week which are completley disabling me. I have been on many medications including (taken every day) Topamax,inderol,toporol, lexapro and ones that are taken only when I feel them coming on fiorocet,relpax,imitrex,frova,percocet,ultrium,axcert,demeral (hospital visits),dyloded (hospital visits) (sp?). I also receive tygan shots to ease the nauseau. I think I am remebering all of them but I might be forgetting some. All have failed me. I have journaled my migraines and the food I take and have eliminitated all triggers I have found so far. I was recently admitted for meningitas where they did numerous MRIs about a month ago. They have found nothing yet. Does anyone have any suggestions for any other medications or advice? When I migraine occurs the pain is unbearable. Some lasting for 6 hours, others last for days. I have had cluster migraines lasting for 5 days which puts me only in my bed unable to function. I blackout, sensitive to light, vomit, and receive nose bleeds from the intesity of the pain.
Any help will be greatly appreciated. I am going to the Montisori Headache Center in NYC next week to see what they have to say also. My nuerologist/doctors are kind of at a stand still on what else to do.

Thanks in advance!
Brooke

Brooke2244
New Member


Date Joined Jan 2009
Total Posts : 4
   Posted 2/1/2009 9:13 PM (GMT -6)   
Anyone?

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 2/2/2009 1:22 PM (GMT -6)   
You could of bipassed one trigger. Hair. I had my hair to the bottom of my rear and Im 5ft tall. The thickness and heavyness of it triggered some of my migraines.
Try cutting your hair. Sounds nuts yes, but it worked for me. You can also try valporic acid as a preventive. Accupuncture or accubeads ( I personally prefer beads) could be tried too. You put the beads in your ears, there are many many nerves in your ears.
 
 
 
Smurfy Shadow
 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux
 
Medications: CellCept, Prednisone, Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D


wantnopain
New Member


Date Joined Feb 2009
Total Posts : 7
   Posted 2/3/2009 9:10 PM (GMT -6)   
Brooke,

I have just finished reading a book that I got from a website on TMJ. The author claims that TMJ is one of the major causes of migrainelike pain. It might be a good idea if you read his book. ON his website, whic is amazingly informative, he has video interviews with several patients, one of whom sounds just like you. I live in California, but am considering visiting him in chicago for an evaluation. Like you, I have been suffering for many years without a whole lot of relief. Some treatments that I have had have even made me worse. I hope that the book helps you-- I hope it helps me. Keep fighting and searching. Don't give up.

His web site is www.headandneck.com and the book is free, you just have to download it.

Brooke2244
New Member


Date Joined Jan 2009
Total Posts : 4
   Posted 2/4/2009 7:53 PM (GMT -6)   
Hello all:
Thank you so much for your advice. I have been checked for tmj and I have no signs of it. Also my hair Is mid length. I will contact you personally Brenda about that product. I am feeling so let down and have yet found something that works so I am willing to try anything. I also have an autoimmune dificiency so maybe that will help also? I have been perscribed inderal for the third time by my neorologist with a lower dose and it's not the long acting one. I don't have high hopes since I have tried it before. Thanks again for all who replied any other insights or suggestions wouldbe great

wantnopain
New Member


Date Joined Feb 2009
Total Posts : 7
   Posted 2/5/2009 12:07 PM (GMT -6)   
I am so encouraged,

I sent the guy at www.headandneck.com an e-mail and he actually sent me one back requesting that I call him. I did that this morning and was able to talk to him. He is quite approachable. my guess is that if you just call his number, you will be able to talk to him if he is available. I had a raft of questions for him, which he answered as completely as he could, considering that he had never seen me.

I too have been told that my TMJ is clear, and I told him that. He said that statement was all too common for the patients that he sees and says that is because most dentists and doctors are poorly versed in TMJ and its diagnosis and that this lack of knowledge yields an improper diagnosis and many times patients who could be helped are basically discarded.

I had been to 2 oral surgeons and one orthodentist, my personal dentist as well as numerous ENt's and Neurologists. I used to take a shopping list of drugs, much the same as those that I read about on these forums, but I stopped taking them due to the fact that they didn't work well, gave me gawd-awful side effects, and were expensive. Yes, I still have a lot of severe pain which really degrades my life, but sometimes I feel that the pain is better than the side effects.

He says that his examination takes about 1 1/2 hours to complete.

I am looking for good air fare so that I can get to chicago soon, with no promises but hope.

I will keep the lists informed.

(I am going to post this same message on a few of the threads that I am looking at, so if you see this twice forgive me.)

LadyAislin33
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 2/6/2009 12:01 AM (GMT -6)   

Hi Brook,

I'm sorry you have been in so much pain for so long without relief.  I'm only into my 2 year and I don't know how you do it.

So far, the best treatment for me has been IV lidocain through the Jefferson Headache Clinic in Philly.  I had very low pain for about a month and 1/2.  It felt great to feel like a human being again.  The downside of this is that everything has a shelve life with me, so nothing lasts forever.

I see that you are going to a headache clinic in NYC.  I hope that goes well.  I find I like places like these over a "regular" nerologist because they are specialize in people with chronic pain and have the resources to treat many aspects of it.  Not to mention you are around people who understand what it means to be in pain.  If you want a list of headache clinics, I have one.  I would be very intersted to hear what treatments they use there and if it differs some like Jefferson Headache Clinic or Diamond Headache Clinic. 

about TMJ, I have treated mine and while it is not gone I haven't found that it has made a huge difference with my headaches minus the fact that all my head muscles have loosened up.  However, it has down wonders for some!

When it comes to my headache I'll try just about everything and I also try to learn more about headaches in genreal.  There is a book called "The Mayo Clinic on Headaches." And I found just reading about it gave me more insight into the headache.  You can buy it for real cheap through people on Amazon.  I reccommend it to everyone.

Good luck with your appointment.  I hope it goes well!
Peace.

Michelle


Nino
New Member


Date Joined Dec 2008
Total Posts : 1
   Posted 2/6/2009 3:26 AM (GMT -6)   

Hello Brook

Following is only my own experience hope it will help you.

After life time of suffering I have came to the conclusion that it is my brain inflammation causing the headache.  I can feel the brain swelling inside the skull.

Once the symptom comes, it won’t stop on its own only getting worse, blur vision follows. The pain and dizziness is constant, any slight movement will trigger vomiting.

The only way to calm the pain and make it disappear is to relieve the inflammation, fight it right from where the problem started.

My battling is simply take aspirin because it has anti-inflammatory effect (or painkiller with aspirin ingredient not paracetamol), the type that you dissolve in water first is more effective; I take “Aspro Clear”.  I can feel the brain slowly deflating and the pain calming down. 

The most severe occasion I can remember was taking 4 doses (2 tablets each), that was because I determined to fight the pain without taking medicine, but the more you leave it, the longer time it would take for the pain to disappear.

However, please do some research first to see if you are safe to take aspirin for example, cautious should be taken if you have stomach ulcer.  And also because you have been taking so many medication.

Good luck.  All the best.


Brooke2244
New Member


Date Joined Jan 2009
Total Posts : 4
   Posted 2/6/2009 8:39 PM (GMT -6)   
Hello!
 
I will definitally let you know how the clinic goes. Unfortunitally I thought they would be able to see me within a week of calling there but it is a three week wait. At least I was able to get an appointment! Thank-you all again. I will keep you posted
 
Brooke
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