Ahhh feel like i am losing my mind…this evening laying down watching tv my head felt really heavy and i started to feel woozy if thats not bad enough i am hurled into a panic attack and needed to write this to hopefully take my mind off until my valium kicks in…why can i never win with this thing…what do you think it could be this time…i was off birth control for a month and just started taking it again and just getting over my period and went to an appt today andyesterday found out that my friends 7 month old baby girl has brain cancer…could that be why i am feeling this way?? god i just feel like i will NEVER get better nad it is worse enough knowing everything that i will miss out in life that i had once dreamed of doing but to be plagued every so often bythese scary new symptoms i just cant win…most people dont recover do they?..this is why so many are still on this board??i might as well face that fact now right?? it is more than likely forever? god i dont even remember what being “normal” feels like i just know i would give my left arm to have that back…i have prayed to god that i would never take anything for granted again if only i could have my life back…

DD - Please don’t be discouraged. I understand how you are feeling. I have those moments at times too. But, I do believe people recover, or at least manage this disorder. If you do searches through the forum, you’ll find a lot of posts from people who are no longer on the board. I like to believe they are better and no longer need to be here. Those of us who are posting are still in the middle of the battle, but we will find a positive way out of this.

It is very likely that the stress you are under right now is making your symptoms worse. I’m really sorry to hear about your friend’s baby. That is heartbreaking to hear. I know it sound hokey, but take some deep breaths and do your best to calm yourself down. I find this works if I force myself to do it. Relaxation techniques certainly aren’t a cure-all, but they do help.

I also think there is a good chance the changes in your hormones from the birth control are triggering some of your symptoms. There seems to be a general consensus that hormones are a big time trigger for women.

I do believe you will get your life back, as will the rest of us. Unfortunately, nobody can say when that will happen. Hang in there and know that we all understand how you are feeling. I am praying for you.

Take care,


DD - Marci is so right, just hang in there and in time I’m sure you will be in a much better position and able to get on with your life. And I agree with Marci too, there are lots of people no longer posting because they’re able to get on with their life so have faith. Whether people can get on with their life without medication or even if they can control their life with medication, makes no difference for me now. I’ve been suffering another year longer than you I think and I’m sooooo much better than before. I have still got a way to go but I am really, really improving and am interacting with life and not stuck at home any more. I realised that my biggest trigger was anxiety/stress and have been on klonopin .5mcg twice daily and now also have a new tricyclic antidepressant called Dothep and I take 100mg daily which is quite a lot, but I want to get a really good handle on this condition and improvement in quality of life before I start reducing. It’s working too, my anxiety levels are much much lower and not triggering the MAV. You appear to have a lot of anxiety/stress also and perhaps that’s a big trigger for you. My neuro keeps telling me that everyone improves and he thinks that I will get near to 100%, I know that sometimes they say these things to keep you positive but I like to think he is telling me the truth. He sees hundreds of people like me he sais and we all have a good outcome so hang in there and let your body tell you what you are and are not able to do, you’ll find that by listening and taking the right meds, your body will allow you to do more and more.

I’m so sorry to hear the sad news about your friends baby, life can be so cruel at times. I have a friend who is unwell and would appreciate my care at this time in her life and I’ve found it difficult not being there for her but what’s the good of that if you think you can’t cope yourself because of your own condition. In time, I’ll be able to pitch in and because I’m looking after myself, I think that time will be sooner. So DD, take good care of yourself, you have your own little ones to take care of too and hopefully, you’ll get those anxiety/stress issues sorted because they may play a major part in your recovery process. They certainly did in my case.

We’re all thinking about you and we’ve all been there too. But lots of us have moved forward too, just like you will. :stuck_out_tongue:
Keep well


It is really weird but I was just thinking this morning that if someone came and offered me a swap, a limb for me to be free from MAV forever, I would take it! Then I read your post! I know exactly what you are going through because I feel exactly the same as you at the moment. I have tried everything I can to get better but so far nothing has worked and I feel very frustrated and tired of it all.

However, somewhere inside there is a flicker of belief that I will get better, whether it is in the next few months or the next few years and I am just clinging on to that and taking each day one day at a time. We will all make a recovery, the medical profession has only just really acknowledged this illness in recent years and treatments plans are being developed and improved all the time. It sounds like you are going to see a Specialist so you will be in the right hands and the right treatment can begin.

I hope you are feeling better soon.

Becky xx

Thanks guys at least my freak out posts are a little farther in between right lol…some days are better than others but i hate the scary woozy pass out feelings they are rare which makes it more scary and it triggers my anxiety…I am trying to be positive but it is so damn hard…I will be starting 15mg of notriptyline when I get around to filling the script

Hi DD,

Judy & Marci could not have said it better. People do get better…but for many of us it’s at a snail’s pace. Of course we all want that Magic Bullet but unfortunatley it doesn’t work that way. Maybe a few find the right pill but i personally believe the majority of us…it just takes time. For the Anxiety that this illness brings…i honestly recommend seeing a professional therapist. It certainly has helped me thru the dark times. But it is important you find someone who you feel comfortable with. Also…watching the diet, managing your stress and getting enough sleep is extremely important.


Second all the earlier replies. I’ve been dealing with this for three years now. Six months ago I was where you are now. Now I think I may have finally turned a corner. I’m not 100%, but I’m close. In addition to working with your doctor I’d encourage you to keep trying to find your individual triggers. Think outside the box - in my case it appears to have been sleep deprivation from long standing, undiagnosed sleep apnea. This was NOT on the doctor’s radar and it took some proactive case management on my part to get them looking in that direction.

We were NOT intended to live this way, so there must be SOMETHING causing it. If you can identify what it is you will improve. Hang in there and fight the good fight. We’re going to beat this.


Hi DD,
I haven’t been posting much lately, due to tapering off zoloft ect.
I just can’t get my head around much.
With the contraceptives, have you thought about using the marina?
It is said to be a little gentler on the brain chemicals, it doesn’t seem to soak the body in as many hormones.
It goes almost directly to the womb.
Also I’ve used the IUD for many years, you should talk to you Gp about these options instead of the pill.
The pill could really put your migs into overdrive.
IUD’s do have a risk, but the marina doesn’t seem to have many at all, and an extra bonus is many women, not all, stop having their period all together with the marina.
This is an advantage for migraineurs, as we don’t need the monthly hormonal disruption.
Some women experience spotting, some stop menstruation.
And resume 48 hours after it has been taken out.
If you’ve already had children, then it can be inserted in minutes by you’re Dr or gyno.
If you haven’t had children, it could be more painful due to the cervix being less pliable, and need the patient under anesthetic.
They give you panadol for the pain after woods and say it’s not much worse than a period cramping, if any?

P’s DD,
I am getting better every day, things do get better.
It just takes time.
You will find the right med and be in control of his mav.
All my love , I’m so sorry about your friends baby.

its funny you mentioned mirena cause i am actually getting it next cycle…i hope it is not too painful i have had two kids but the second was a csection cause the first one cause a terrible 4th degree tear that took 4 months before i could sit down without a pillow yeah TMI i know…

dont tell the boys they’l want one.
I had an episiotomny.
disgusting obstetric ritual mutation.


“getting off” BC’s for a month, cold turkey?
Now your hormone levels are really trashed. Or should I say CRASHED.
No wonder you feel horrible.
I had enough and just started taking estrogen today and will do it slowly.
Then I have to add progesterone.
I don’t think hormones are my problem, I KNOW it.
The last two days I could actually walk for god’s sake and use my glasses without getting visually effed up.
Then all hell broke loose late last night, and this morning I got my period. Absolutely HORRID symptoms when estrogen crashes.
You really need to get your hormones balanced. Without realizing it, you really did quite a number on your body by stopping BC pills all of a sudden.
That’s quite a shock to the system.
And of course you are going to feel worse during menstruation and right after since your hormones are so low at that time.
I read a study where it is actually a migraine preventative to have your estradiol above 100 pg/ml.
Most women don’t have anywhere near that level after a certain age, and if they use HRT, their idiotic doc will give them such a low dose of estrogen,
it can actually CAUSE migraines.