15 MONTHS of CHRONIC daily migraines- Doctors are to blame

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

deathbymigraine
Regular Member


Date Joined Jun 2014
Total Posts : 50
   Posted 6/19/2014 4:25 PM (GMT -6)   
Hi everyone I'm new here. Like most of you, I am reaching out for support by people who will be able to empathize. Here's my story- it's quite a sad one.

I am a 21 y/o female that never had ANY headaches until March 2013. As a teen I experienced a migraine variant- frequent dizziness w/ aura- but no other symptoms. In March last year I decided to try Prozac to help cope with my depressive disorder & anxiety (mistake #1). I also decided to begin a birth control just a week or two later (BIGGER mistake #2). **I am not one to seek medications. I am very anti-meds, & am disgusted with the country we live in where doctors hand out debilitating pills like candy** However, when you're desperate for relief, you feel as though you have no choice but to try something different.

I was only on the BC pill for several weeks because I felt SO absolutely terrible (headaches, nausea, you name it) and bled EVERY day for a month…so I stopped (I know these side effects are expected for the first couple months but this was something else). I was on Prozac until August 2013. I thought the headaches would go away after stopping BC but I was wrong. In August I attributed the headaches to Prozac so my doctor switched me over to Zoloft. The Zoloft helped maybe 20%. It seemed to raise my threshold and my SEVERE headaches became just bareable. However, I began to experience horrific panic attacks so i decided **** anti depressants, and I weened myself off of Zoloft in October for good. Once completely off meds, the headaches came back with a vengeance. Since then, I have been in excruciating, debilitating pain. The headaches are there from the moment i wake up to the moment i fall asleep.

I have seen every doctor plus 4 neurologists, gotten an MRI, MRV, and CT scan of my head/sinuses.. I even had endoscopic sinus surgery in February hoping once my sinus cavities were cleared out my facial pressure would go away, thus the headaches would cease. But no luck with anything. I have tried numerous meds with no luck. I have been doing acupuncture for months and that only seems to help for 24 hours. I have gotten a couple injections in the ER to kill the pain in the past couple months. I have done E V E R Y T H I N G.

Fast forward to now, 15 MONTHS of daily suffering. I am taking an entire year off University, I have no social life, and I can barely leave my house due to the horrible pain and now social anxiety I have acquired from staying home for so long (the only time i leave my house is for a doctor appointment. I spend almost every day crying and massaging my neck which is sore from lack of activity as well. Neurologists have called what I am experiencing "Status Migrainosus," meaning I got a migraine from the medication and it NEVER went away. (sounds great right?) It's very frustrating because I feel so ashamed/guilty/angry that I tried those medications, and at the same time. I was young & didn't know what horrible effects those pills would have on me. But if anyone is to blame, in my opinion, it is the doctors… they should have warned against starting two new medications at the same time but no one stopped me.

Anyway, any help, advice, or love is greatly appreciated. I don't know how much longer of this i can take. over 400+days of constant headache when I'm a young, social, outgoing girl. I feel as though my life is over. This week I met with a new neurologist who has placed me on one week's course of Naproxen 500mg twice a day, along with a beta blocker Propranolol 10mg twice a day (i also suffer from racing heart & palpitations.) I would also like to know if anyone has had success from these meds.

Please help.. I feel very alone and hopeless and I'm ready to give up for good.
Thank you.

Post Edited (deathbymigraine) : 6/19/2014 7:42:38 PM (GMT-6)


Celticherself
New Member


Date Joined May 2011
Total Posts : 1
   Posted 6/20/2014 8:14 AM (GMT -6)   
I'm so sad for you! I have had similar period in my life! My hysterectomy caused a drop in Estrogen that caused a non stop Migraine attack until my Gynecologist solved the low levels with Estrogen only replacement therapy. Then when Menopause arrived, the same event (Low Estrogen) caused Status Migrainosus. I got help by increasing the Estrogen levels.
I also was helped a LOT by the Sleep Apnea Study and treatment. I was not achieving the right level of sleep so the Migraine attacks were daily.
After that I discovered that I had been taking my Triptan too often and caused Medication Overuse Headache to come on a daily basis. I am now meeting with a Migraine Specialist to get Botox shots in my head and neck to prevent Chronic Daily Migraines.
I HOPE you can get the help that WORKS for you!
Celticherself.

DanielleC
Regular Member


Date Joined Sep 2012
Total Posts : 28
   Posted 6/21/2014 4:17 AM (GMT -6)   
Hi there,

First of all i want you to know that you are NOT alone.
I have been there, most recently still going through it and hopefully coming out the other side.
I was the same, in the house day after day after day, thinking life isnt worth living, crying all the time etc etc
LIFE is worth living. MIGRAINES aren't worth giving in for because you WILL come out of this.
My saviour medication touch wood so far has been Topamax (topiramate). Before i was on 100mg and this time I'm on 50mg. I am also on 160mg propranolol but don't think its doing anything so will be reducing that.
If you don't have any relief from the propranolol try Topamax. Dont read about side effects and freak yourself out because I did that, cause myself an awful panic attack, put off taking it, then when i did eventually start taking it apart from a few days of mild nausea and tiredness i was fine! Now I never read side effects of anything!

If you ever want to talk this forum is great or feel free to drop me a private message, just don't feel alone xx

deathbymigraine
Regular Member


Date Joined Jun 2014
Total Posts : 50
   Posted 6/25/2014 5:30 PM (GMT -6)   
Thank you both for the kind words and help, I really appreciate it.
I stopped the Naproxen & Propranolol combo after several days because the Propra gave me tremors, insomnia, and worsened my depression. I had a similar experience with a past beta blocker i tried called Metoprolol (don't know why this time it would be different) so I've come to realize that I'm just much too sensitive to this class of medication.

2 days ago I met with my neuro again, explained my issues with the beta blocker and cried when explaining how desperate I am to get relief so i can be a normal young adult again. I told him that I can't suffer another day in pain, so I need something in the mean time if he's going to have me try a preventative medication again (which takes weeks to work as you all know). He understood and has put me on a 4 day trial of Dexamethasone, a steroid, and will have me begin Cymbalta after the 4 days. I took two pills yesterday and suffered from the worst insomnia of my LIFE last night- I swear I didn't sleep for even a minute. Today I understandably feel lethargic and awful, so i just took 2 halves, and will likely do the same for the next 2 days. The steroid has seemed to taken the edge of the headache tho.

Anyway, I'm really nervous about starting Cymbalta. I've never tried an SSNRI. I've been on 3 different SSRIs (Lexapro, Prozac and Zoloft), and the last time I tried an anti depressant was Elavil/ Amitriptyline of the tricyclic class in January. I tried it for two weeks and when i was supposed to double the dosage I stopped completely b/c the Elavil made me very angry, moody, and gave me overall feelings of malaise. I've done my research on Cymbalta and it's definitely not on my top list of meds I want to try.. I'm scared it will worsen all of my symptoms and that I will be on it for months with NO improvement (Plus, i heard withdrawal is a nightmare). However I don't have much choice. I will be starting it in a couple days and posting about my experience on it. If that doesn't work then I'll probably resort to Botox (which i REALLY don't want).

Life is misery.

Casandra
New Member


Date Joined Jun 2014
Total Posts : 1
   Posted 6/26/2014 12:44 AM (GMT -6)   
Hello,

I have read every word you posted and wanted to let you know that you are definitely not alone. I am in the same predicament. I am 20 years old, and I've had constant headaches/migraines for about 5 years now. They happened out of the blue, and I had thought it was just a normal headache because I would get them here and there, but as the days went on, it just became worse. Medicine wasn't working, and it got to the point where I would literally start crying my eyes out..be it in school or in restaurants with my family. I have been everywhere, family doctor, neurologists, therapist, psychiatrist, allergist, chiropractor, even went through a sleep apnea test. I've been on many many medications and not one has helped. I've gotten several CT scans and an MRA, which had scanned the arteries and veins in my head. They never informed me of anything, except something about a vein in my head but still nothing. I have urged for an MRI but have been refused by my last doctor because "I've already had CT scans and an MRA."

I am on this website now because there is no one here who understands what I'm going through. I haven't seen a doctor for maybe two years now? I'm not quite sure, but I've just been dealing with these migraines. They are always there, mostly headaches but they still get super bad at times like right now. I have cried my eyes out and feel very nauseated. When I first got these, my social life crashed. I came home from school and went right to bed, I stopped texting my friends, I stopped playing sports, I missed many many days of school, and never even wanted to go or do anything. I just deal with them though. I push myself through the pain. I feel that you need to think positive. No one wants to deal with pain, I know it's hard but it's true. I just always think that there's people out there who have it worse than me, and I am thankful that I only have a migraine. It's still terrible, and I'm wanting to see a doctor again and try to get an MRI. It's getting to be too much at this point. I would like to know how everything goes for you, and please remember that you are never alone.

deathbymigraine
Regular Member


Date Joined Jun 2014
Total Posts : 50
   Posted 6/26/2014 4:07 PM (GMT -6)   
Casandra, I am so sorry to hear that like me, your adolescent life has been stolen by you by the evil power of migraines. I hope you get some relief soon. It's a shame that as girls, our hormones are so out of our control and cause us so many unnecessary problems.

I know I'm not a doctor but I do agree with what your doctor is saying that since you've already had extensive testing done, an MRI isn't going to show much/anything. I've had an MR, MRV AND CT and all came back "perfect" (besides the CT scan showing sinus damage for which i got sinus surgery). The less testing you get the better. It's better to focus on treatment since those tests never give us the answers we want anyway.

Have you tried acupuncture? I highly recommend it. Find someone legitimate and it helps take the edge off if nothing else. I also swear by this oil called 31 Herbal Oil which is also not so cheap but WORTH IT. It helps with nausea, headaches, muscle pain, stomach aches, the works. Do yourself a favor and buy some (it lasts a long time too). http://swissjustusa.com/en/product/31-herbal-oil

I hope you and everyone else who sees this thread will get relief soon. Best wishes.

deathbymigraine
Regular Member


Date Joined Jun 2014
Total Posts : 50
   Posted 6/29/2014 5:22 PM (GMT -6)   
Today is day 2 on Cymbalta. So far I have a headache (unsure if that's additional or my usual headache), stomach pains, nausea, and am disoriented. I feel like I'm getting over some terrible flu and I'm only on the lowest dose at 20mg. I've read so many horror stories about this med. Does anyone have any experience with it? For Migraines? Should I really stick out 4 weeks of feeling like **** on the 5% chance that it might help my chronic daily headaches??

I really don't like the idea of being on a daily med, especially an anti depressant. really stuck and losing hope here. Should I try Botox?
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, May 22, 2018 2:14 AM (GMT -6)
There are a total of 2,964,874 posts in 325,184 threads.
View Active Threads


Who's Online
This forum has 162911 registered members. Please welcome our newest member, CelticPoet.
212 Guest(s), 0 Registered Member(s) are currently online.  Details