HAS ANYONE GONE THROUGH THIS?? I think I've tried everything.. please help, if you have advice??

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New Member

Date Joined Sep 2008
Total Posts : 2
   Posted 9/21/2008 2:09 PM (GMT -6)   
 Hi.. I feel alone on this one. Ive been reading here and haven't been able to relate to anyone with my situation.
  A year and half ago I had a headache came on all of a sudden out of the blue. Not ever being a headache person before.. It lasted for 3 days before I went in to the Doc. 3 weeks later after 2 more Dr visits with different meds and a couple shots I ended up at the neurologist who sent me to the hosptal for a spinal tap and then reverse spinal tap because of a even more extream headache do to the spinal tap. He to put me through many test with the end result being tention type/ migrain headaches.. lasting for an avarage of 3 to 4 days at a time at about 8-9 on the pain scale at its peak somtime lasting a week.. But never over the last year and a half ever really going away..Some days better then others but, with many trips to the Dr. and a couple to the ER. 
  The neurologist put me on TOPAMAX (what seems to be a strong subject on this site) starting with 1 and now up to 3 a day. Also vicodin that seems to make it worse after an up and down effect, maxalt and valuim. oh and also somthing for feeling sick during a attack.. Not to mention I dont like to take drugs at all..
  Ive also tried accupunture, massages etc. well as completly changing my diet, exercise etc. Although I am very healthy other wise and take very good care of myself.
  So now 3 weeks ago I did the RADIOFREQUENCY ABLATION and for two weeks I was pain free (except for the first few days of soarness from the surgery) I thought I was in the clear and so happy.. I thought I had my life back..but to my surprize they came back just as the came..I just don't know what to do now. I haven't told my husband or friends because they think now that Iv'e been "FIXED" and I dont want to complain anymore. I have four kids and even they looked at me different for that 2 weeks. The Dr. told me before the surgery that, that was one of my last options.. Does anyone have any other ideas??  Thanks so much for any help....alonna17

Regular Member

Date Joined Dec 2006
Total Posts : 53
   Posted 9/24/2008 11:43 PM (GMT -6)   
Hey Alonna17,
I'm sorry that you are going through all of this and I understand how you feel.  I haven't had a pain free day in two years (Sept. 22 was the anniversary).  First, I think you need to be honest with everyone on how you feel.  I find the more emotional support you have the better.  Second, have you ever tried going to a headache center?  I don't know were you are located, but there might be one in your area and if you are willing to travel there are several excellent ones around the country.  I would recommend checking out the Diamond Headache Center in Chicago.  They treat people just like us and they have an excellent treatment center.  I've also just had an appointment with the Jefferson Headache Center in Philadelphia and like what I see there.  I've also heard that Mayo isn't bad, but I have no personal experience there.  If you want to find a place closer to where you live, I have a whole list I got from a doctor at Hopkins.  (Yes, I've seen my fair share of doctors in these last two years).  Please let me know if there is anything more I can do to help.  I hope you feel better soon.

New Member

Date Joined Sep 2008
Total Posts : 5
   Posted 9/25/2008 1:13 PM (GMT -6)   
I started out with the same stuff that you are stating went to the neurologist and put me on a low blood pressure meds and it didn't seem to help. I went through this and emergency room visits after the fact, I ended up changing to a different doctor and she seemed to start helping me out. I was just diagnosed with fibromyalgia and CFS and I still suffer from the headaches just not as sever as what they were. I am still looking for the right medications to help me, but I know that it takes time and I am trying to be patient, you may want to check with your doctor and see if this is something that you may possibly have also.

New Member

Date Joined Oct 2008
Total Posts : 7
   Posted 10/17/2008 2:21 PM (GMT -6)   
I'm so sorry this is happening to you, my Father went thru something similar 3 years ago. They thought he had trigeminal neuralgia, I'm guessing the neurologist would have checked this out as a possiblility. Unfortuantely, my Father had cancer and his pain was due to electrolyte imbalances caused by his particular type of lung cancer ( he smoked for 40+ years). Hang in there. My father found significant relief with Fentanyl patches, you might check those out with your doctor. Good Luck!

Veteran Member

Date Joined Jun 2008
Total Posts : 903
   Posted 10/18/2008 8:34 PM (GMT -6)   
Oh dear, I am so sorry; unfortunately not all headache specialists are the same and while Topomax is great for some people, it's not so great for others. I finally went to MHNI in Ann Arbor, I see Dr. Rozen; they diagnosed me with 5 different types of migraines (who knew??) including cluster/cluster feature migraine. You can find them on line at MHNI.com . (Oh, btw, do you have reflux???, believe it or not, severe reflux is emerging as a huge factor in intractable migraines!)

My path to being better has been long and not always easy, but always progressive; like the others here I am suggesting you look at another neurologist, my personal experience at Diamond was not as good as others, but I'll swear by MHNI..of course everyone is different as are their needs.

As far as your procedure, I can tell you that there are no guarantees with them either. I had some done with minimal success, went to another pain specialist and completely different story; I don't know why! These procedures are not guaranteed to last forever and two weeks, unfortunately is not that uncommon. Please check to see if what they did was just a diagnostic test; often, most often, they do a diagnostic to see how well you react and then schedule you for the more long lasting one (notice that I refuse to say "permanent"!!)

MHNI refused to give up on me and that is what I needed when I was at my worst. Perhaps your Dr. means that the procedure was the last option that he could do; you may be beyond his level of knowledge.

Please contact MHNI, Cleveland Clinic or John Hopkins on Monday; don't give up!!


New Member

Date Joined Oct 2008
Total Posts : 3
   Posted 10/20/2008 6:54 PM (GMT -6)   
I am sorry that you are going through this, I have been through a lot in the last 15 years and tried almost everything. Two years ago when my sister's death turn a stressful life even more stressful, I started a new round of pain with burning sinuses. When I went to the allergist to talk about it (Migraine) an old slight problem started to come back. I sometimes felt like my ear or the back of my head was warm. I never bothered to tell the doctors about it because it was slight, and it didn't hurt. My allergist sent me straight to my neurologist. My facial nerve was pissed off, and sending false pain messages to my brain! I was starting to feel cold or hot or a pinch all on the left side of my face. I still had burning sinuses and migraines. I started to take Lyrica, the drug for fibromialgia. My life has changed. I still have to avoid msg, preservatives, alcohol, get regular sleep and exercise. (walk the tightrope) But for the first time in years, I have only had two migraines that I could treat with Imitrex in the last five weeks. I'm starting to tear up now. I actually have hope of getting a part time job. If you have any of those phantom events, maybe this could help you.
Good Luck to everyone, I know your pain, and I hope you find a way out.
( I have also been working with a therapist, I have been putting my happiness aside for others, and my body was trying to tell me something)

Veteran Member

Date Joined Jun 2008
Total Posts : 903
   Posted 10/20/2008 9:04 PM (GMT -6)   
Congratulations Phoenix! Let's hope your path continues to be smoother and more pain-less! Once you recover your life you'll feel renewed and alive again.
Good luck!
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