This is a long post, I'm sorry, but I could really use your help!

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tlhess
New Member


Date Joined Apr 2006
Total Posts : 12
   Posted 4/1/2006 7:21 PM (GMT -7)   

I have been a migraine patient for almost 5 years.  We believe my first migraine was September of 2001, but was not diagnosed as so at the time.  I was lucky enough to find a wonderful man who loves me despite of me always being “sick.”  He and I have reached the end of our rope when my migraines all but ruined our honeymoon this past February.  I am writing this because I don’t know where else to go or what else to do.  I need help and I am hoping someone can do that, I can’t keep living like this, it is not fair to me or my family.

            I figured I should list what has been tried over the last 5 years.  I have seen numerous neurologists, most while I was in the service.  I have had many MRIs, CT scans and EEGS, all of which have been normal.  I was told on an MRI in May 2005 that I had calcium deposits on my brain, but that it was not anything to be concerned about. 

            Here is a list of medications that have been used for both abortive and prophylaxis for my migraines:

Phenargan 25-50mg PO/IV/IM, Toradol PO/IV/IM, Maxalt, Imitrex PO/SQ/nasal, Elavil (max 100mg QHS), Zomig, Compazine, Zoloft Fioricet, Ultram, Depakote, Cafergot, Nadolol, Reglan, Verapamil (max 80mg QD), Stadol, MS-contin, Buspar, Pamelor, Predinose tapers, DHE-45 IV/IM, Migranal nasal, Ativan, Valium, Decadron, Nubain, Droperidol, Relpax, Topamax (max 150mg BID), Neurontin (max 300mg TID), Zonegran, Botox injections, Paxil, Benadryl, PT & Spinal manipulations, Zyrtec, Frova, Cymbalta, Geodon, Keppra, Benicar, Cataflam, Trazadone, Magnesium, Vitamin B-2, Lunesta, Ambien, Psychiatry and Psychology care, acupuncture, NMT

As of this letter, I am no longer on daily medications.  I have PRN phenargan, Imitrex PO/SQ, and DHE-45.  My migraines do not typically change in presentation.  I have pain behind both eyes, with is a very intense throb.  I usually have associated nausea, vomiting, photophobia, audiophobia and halos around objects.  I have had numbness and tingling in my fingertips and toes for almost 2 years now, and was told it was related to the high Topamax dose I was on.  I, unfortunately, have had too many visits to ERs and Urgent Care Centers for acute treatment.  I am tired of this and need to find another avenue.  I currently have massages about once per month to try and relieve the tension. 

If anyone has any ideas, or something that may have worked for you, I am reaching out here.  I will be visiting the Headache Care Center in Springfield, MO the 2nd week of May to see what may be able to be done.  Any help, hope, or support you may offer me is so much appreciated, people that don’t have these try and understand, but they will never understand it on the level that you all do.  Thank you!


open-minded
Regular Member


Date Joined Mar 2006
Total Posts : 62
   Posted 4/2/2006 12:52 AM (GMT -7)   
tlhess- oh my god- i should be asleep but i cannot believe what i am reading. you poor, poor thing. what a drug list! i am speechless. i wish i could give you a hug. my gosh- what suffering. u r right- people that don't get them, just don't get it.

i posted "how i deal with migraine" with strategies that work with me. i wish i could give everyone a massage here. i wish we could hold a symposium and have all the top nuero docs here to listen and brainstorm. hang in there and please don't give up.

do you like your job in general? is there anything in your life that makes you dread it? sometimes i can worry and bring them on. I AM NOT IMPLYING THAT YOU CAN CONTROL IT BY ANY MEANS! i just know stress can trigger it and i am thinking, all these medications and still no relief? is there a plant of some kind near where you live that could be the culprit? (polution) have you looked into bio-feedback? something probably right in front of your nose is causing these? what about diet? preservatives are known triggers like in lunchmeats... wow- i am racking my brain here. is your car emitting smoke? live by a freeway? lead paint? asbestos? have you been tested for allergies? water quality been checked? carbon monoxide? truly i am blown away! i am surprised we all haven't thought about cutting our heads off. you poor thing. i wish there was something i could do. i am praying for you and am going to ask for even more patience for your wonderful hubby, too! btw- sometimes i pray- i will repeat "hail Mary's" til i fall asleep like people count sheep. it can't hurt! bless you and am hoping you get some help at the headache center!

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 4/2/2006 3:28 PM (GMT -7)   
Hi tlhess, Welcome to Healing |Well. I am sorry that you are sufferering so much, and my word I am staggered at the long list of drugs you have tried!! You didn't say how often your attacks occur? I have had Migraine for 30 years plus and the attacks have evolved over the years and the frequency for me has increased with time. I am now up to 2 or 3 attacks per week but over this last week I have had 5!!!

I am glad you are going to see a Headache Specialist as I think most Neuros are out of their depth with some sufferers! I know from experience there are no magic answers with Migraine because everyone is slightly different. I wonder if combinations of drugs are helpful, have you tried any combinations of preventative meds? I am waiting to see a headache specialist too! I am hopeful that a specialist or specialist centre can be of more help than you and I have received so far!!

It sounds as though you are doing everything to help yourself that you can, and I am so glad you have a husband that loves you no matter what. Both my husbands could not cope!! - so it is now just me and my teen - and therein lies another story!!

I will pray for you, I cannot offer any medical advice as I am not qualified, but I can offer empathy and support. Please keep in touch and let us know how you get on, take care Ann.

open-minded
Regular Member


Date Joined Mar 2006
Total Posts : 62
   Posted 4/3/2006 5:17 AM (GMT -7)   
ann- here's hoping that you get some relief, too.

your x'es probably don't desreve you! you seem so kind- always trying to help people out around here> i am in the same boat as you but they just weren't right in the first place! i am blessed bc my 2nd is very empathetic to my migraines and will look after the children when i am out of comission. and the oldest isn't even his.

i do hope your ha specialist is able to help. mine started at puberty so i am hoping when menopause hits- i will not get them so much! did not have them during pregnancies either.

you are so right about them being so different for diff people. good luck to you both and have a happy monday!

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 4/3/2006 5:26 AM (GMT -7)   
Thanks for that open-minded, it is lovely to have such encouragement! Unfortunately for me I am post-menopausal!!! But I do hope and pray that it will be very different for you!!

Wishing you a headache-free week! - take care Ann

open-minded
Regular Member


Date Joined Mar 2006
Total Posts : 62
   Posted 4/3/2006 5:44 AM (GMT -7)   
thanks annuk- it's my birthday and i guess that is what's got me thinking of things to look foward too as i age! so yours didn't go away? dang! hope you are well too!

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 4/3/2006 7:16 AM (GMT -7)   
Sorry open-minded, me and my big mouth!!! lol - I do know of someone who's migraine did go with the menopause, and I am told that is more the norm!

HAPPY BIRTHDAY!

love Ann x

DrewTN
New Member


Date Joined Mar 2006
Total Posts : 5
   Posted 4/3/2006 12:40 PM (GMT -7)   

Hess,

Sorry for the pain you have been going through.  Your list of meds is VERY familiar to me.  I have been on 90% of those you listed.  I had to stop the Topamax when the side effects were worse than the benefits.  My neurologist referred me to a pain clinic when she ran out of ideas and meds. I am glad you are going to the Headache Center.  I hope they can help you in some way.  I went 4 years with no relief.  I pray that you will find an answer.    

The pain clinic tried nerve block injections, more specific PT and biofeedback.  I am now on Duragesic patches and take generic Dilaudid for breakthrough pain.  (I also take Maxalt Melts, Clonazepam, Clarinex, Lexapro, Lidoderm patches and zanaflex) Just FYI the Maxalt regular didn't work for me but the Melts work much better.  I have constant daily headaches (Cervicogenic headaches) and when they get bad enough they turn into migraines.  My pain has been reduced significantly now that I am on stronger pain meds. 

I wish you the best of luck and wanted to let you know it is possible to find some relief.  You give me hope that I might actually find a man someday that will accept me and my pain.  (((HUGS)))

Take care,

Drew


open-minded
Regular Member


Date Joined Mar 2006
Total Posts : 62
   Posted 4/4/2006 10:04 PM (GMT -7)   
oooh- i liked those melts too. haven't had in awhile as my ins doesn't cover. i don't think they sample them anymore!

tlhess
New Member


Date Joined Apr 2006
Total Posts : 12
   Posted 4/9/2006 4:49 PM (GMT -7)   

This is amazing everyone!  Never have I felt so much understanding and support.  I am tearing up right now, this means a lot!  Another week, another migraine but it is only 28 days until I go to Missouri!!!  My husband is looking into getting us transferred out of New Orleans since I am definitely worse here than anywhere I have ever been and we have no support out here but each other, when he is at work I am pretty much alone.  We are eventually settling in central Florida by my family, but that is not until he gets out of the service...it would be really nice to get out of here.  Someone suggested Noni Juice, has anyone ever tried this?  Did it work?  I am not taking any medication except my phenergan and imitrex as needed and would really like to keep it that way.  A thousand THANK YOU'S to all of you and my thoughts and prayers are with you all!!!!

 

 


Thank you for the support and encouragement....Remember we are not alone in this


SpurFrog
New Member


Date Joined Apr 2006
Total Posts : 8
   Posted 4/9/2006 7:55 PM (GMT -7)   
I had my first migraine when I was 12 years old. My daughter had her first at 7 years old. I was just so sick to my heart when she had her first one. This is what I found that really has curbed my migraines. NO MSG or Asparthame, actually no artificial sweetners. I will get a migraine sure as heck if I have either. Also processed foods don't help. Before I found my trigger I would be in the ER a couple times a month for the migraine "cocktail" now i have very few. Thank the Lord. When I do get them now my hubby will hold my head real tight and tell me a story of when we did this or that. Sometimes it helps and sometimes I am camped out on the floor of the bathroom throwing up until I can get to the Hospital. My family has a history of Migraines and it breaks my heart that I passed it on to my young girl. She is 9 years old now and with careful diet we can pretty much control them.
Life is so unfair!! My thoughts and prayers will be with you.
Spurfrog
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