Migraines everyday, all day, for 9 months. Help!!

I'm so glad I'm not alone in this! My headaches aren't constant, but I have 3-4 every week, starting in the morning.  I'm not even sure what I have. Sometimes they're migraines. Sometimes they're cluster headaches. Sometimes they feel like ice picks being shoved through my eye sockets. I've had them for around a year and a half now. It's so painful I can't keep my eyes open. My doctor gave me Topamax and waved me off.  W h a t do I do?! 

I started to type a response, but I don't know where it went.  So if you end up seeing a partially written response, please forgive.  I don't  know if you are still monitoring this post thread as it started four years ago.  I also don't know if you ever solved your problem, but it sounds similar to my situation.  Mine started 8/22/2017 and now it is 2/15/2018 and still with me.  I also had a CT scan, oxygen treatment, arterial biopsy (head area), MRI regular, MRI complete spine and head with and without contrast, seen a neurologist, and still no diagnosis.  Pills do not work; haven't tried all that medicine that you had, but why try meds when it doesn't touch it.  I have found one thing that gives me a few hours of relief.  A blend of essential oils that Includes Peppermint, Frankincense, lavender and wintergreen.  Initially I had a blend called "Past Tense" from DoTera.  That ran out so I was using the four oils and I mixed them into a small glass container with a roller ball on it.  Every 2 to 3 hours (it started out I could do it every 3 or 4 hours) I roll the oil mixture on my temples and at the base of my skull in the back.  For a couple hours the pain is gone, although I still have some pressure and it causes my scalp to feel warm.  But at least there is some relief.  Did you every find a solution to your problem?  I hope so, cause I hate to think of you hurting now, four years later.  Marsha in Oregon

 

Hi i have the same issue i cannot relate enough can you please tell me what ended up happening to you or what did they end up doing for you or finding out? Thank you!

Dear Becky-louise,

I have had the SAME exact thing for 6 months now. I can't believe I found someone who has the same thing as I do. Please let me know if you have found anyway to relieve the pain. I have had scans, a bunch of meds, the dieting, and everything you have mentioned except the spinal tap. Please reach out!

Thank you,

Liz

Hi becky 

Sorry to hear your suffering from this debilitating constant headache 

I know this is a old post hope your doing better 

Hope  you see this message because iam in the same constant pain been a year realy put me down cant leav the house lost everything to it , same as you my scans and tests are all normal , i dont know what to do , 

I need help and support what has worked manage this or some sort of relife 

Thank you hope your well 🙏

Hi, I hope you found some kind of relief. I am going through the same thing and I was hospitalized for a week in January and my neurologist says he has given me every med he can. I have had the same migraine since January and it just won’t go away. I go to a headache specialist on this coming Friday. I am 16 I feel I am missing out on life. I’ve been put on homebound and do online schooling for the days I feel somewhat okay. i am hoping you found relief. I hope you see this message and can tell me what helpped you. At this point I feel like a lost cause and I am willing to try anything.

Hope you are well

I've had migraines since I was age 14 - quite a few decades ago now! For the previous 6 months or so I'd had them 24/7, they were debilitating and I had no life whatsoever. Over the years I must have tried every preventative there is. The one I was on before my current preventative was Topamax and it worked very well for some years, (initially completely with no migraines at all) until it totally stopped working, so all I was left with were the horrible side effects that go with this medication and no benefits. I had to reduce them very slowly as they're so addictive, I was taking 50 mg twice daily. Once they were out of my system, my neurologist suggested I try Riboflavin which I've been taking for about 6 weeks so far. The general success rate for these is hit and miss, but surprisingly they're working fairly well, I can go several days at a time with no pain and other days just a niggling headache. I've had several "full blown migraines" since starting them, but they're much shorter lasting and usually not as painful. They are worth giving them a go if you've tried everything else, they have very few (tolerable) side effects. 

Unfortunately, I can't have triptans, or anything stronger than paracetamol (tylenol) as I'm not allowed to take anything else because I take blood thinners amongst other medications. Paracetamol doesn't help my migraines at all. 

Riboflavin needs to be taken at a lower dose at first, quickly building up to 400 mg daily, 200 mg twice a day for migraine prevention. I just hope they keep helping in the long term, fingers crossed. 

Hi, I know i’m a stranger but I am having the exact thing and my neurologist has prescribed me the exact same meds as you. I’m almost 16 and these migraines took me out of high school and have really been ruining my life. What I have learned though is I have advocated for myself so much about what meds I want to try and that my pain is real and that has helped my relationship with my doctor. I know you posted this a long time ago but if you’re still struggling or have found something that worked I would love to talk.

 -Ella

Hi Becky. I have the same  thing!!!!!  My MRIs are clear. My CTs are clear!!   The same!!!!!!!!!!!!!!!!   I’ve been to every doc I can imagine.   They also think I’m nuts!!!!   I also have deep inner ear pain. Does your tongue have spasms?   Maybe trimgeminal neuralgia. Or occipital neuralgia.    If so your neurologist can give you a shot in them and the pain goes away. Sometimes all it takes is one shot.  If you have tongue spasms  you could have glossopharnageal.    I also was suicidal because the pain was unbearable!!! Truely   I now take amatryptaline 10 mg  3 tablets at night. I started out with three but three made me nuts!  So I cut down to two and that has saved my life!   I also tried lots of drugs to help it but nothing would touch it.    I’ve had this pain for 4 1/2 years now .  At least the amatryptaline has made it bareable. I still have pain everyday.   I am now up to three tablets at night.    I wish someone anyone could help diagnose what I have.   I thank doc Summerfield  everyday for helping me get  the pain down to where I can function!!!!   There are a lot of other drugs you can try if your doctor is willing to help you.      I hope this helps you!  God bless!!

Oh it is not a migraine   It never never stops!!!!!  Ever!!!  Right?     Not a migraine.