Can’t stop crying.
I’ve had yet another crappy day with YET another Gp with a bad bed side manner… is it ME???
No it’s not you. The part that is you, is the part that is going through something really difficult and it brings up a lot of emotions and stress. You know you have this board and the people on here totally understand
and get where you are coming from.
Believe that things will get better. YOu just have to take it a day at a time and make it through. WHen you get to the other side and get things balanced back out, it will be easier to have the perspective needed to
accept all this crap.
I have had days of non stop crying and wanting to throw in the towel on my life…days where all I hoped for was to make it through to nighttime so I could take a sleeping pill and go to sleep. That s no way to live and things
will get better…sometimes it’s hard to believe when you’re in the storm.
Im sorry you are going through this…have faith…persevere…it will get better.
Kelley
Jenny,
So sorry you feel so bad.
I wondered if you are in the UK as you said GP , usually a term used in the UK.
If so, shouldn’t you try to see a specialist who understands your illness rather than a general doctor who will leave you feeling frustrated by never understanding MAV ?
Just a thought…
I wish you well, and strength
Penny
Thanks Kelley and Penny,
This post was just me getting my frustration out.
I don’t normally post much anymore.
I’ve had Dizziness 24/7 since I was 29 , I’m 47 this month .
All the research I’ve done on mav hasn’t helped my situation, at all.
Penny ,
I live in Australia, I’ve seen 5 neurologist , and no one knows how to treat Mav , in fact Most Gp’s have never learnt about Mav, so like everyone else here, my medications ect… is trial and error.
I had a falling out with the Dr yesterday; he wanted me to see YET another neuro, and I refused to put myself thru it again. “False hope “ doesn’t help me anymore, it just sets me back emotionally, you know?
I’m just tired of it all, handing out money hand over fist, for someone to stare blankly at me and say “go back to you’re GP”
I hope you get some relief soon.
jen
Jen - I just read your post and I am so sorry about your experience, and also sorry to hear that you have been ill for a long time. if you don’t mind sharing, I was wondering if you have been on ma ny drugs to therapeutic doses without success? what specific drugs and doses have you tried? thanks so much
Lisa
Hi Lisa,
No probs ,
I’ve tried
zoloft, 100mg for years
sleeping was a problem as the noredrenallin gave me insomnia,
It was my first med , after being told I had MDDs, only to find out years later it was mav,
Zoloft broke my migriane cycle within the first 3 months of taking it.
remssion lasted about 6 months, then came back and has never left
**Dothep (prothiadon) **75 and 100mg
looking back it was another bandaide med, for me a much better alternative than effexor.
I can’t use it due to tackycardia, I had a svt av node ablation, I still have a dicky heart that speeds up at any given moment.
I was happily on dothep for many years.
Paxil, wow the noreadrenillin was over the top!
I was on it for two years, without remission, and without sleep.
endep, 10mg
3 month trail , migraines were worse and dizziness unbearable.
verapamil, 240mg
3 years , until I found out I had an allergy tp it, coughing up all the time.
it did help lower symptoms, but didnt slow down or stop the migraine cycle.
saint johns wart 2 years
worked quite well for me, cardiologist told me top get off it.
Topamax 5 months got up to 8o something mg splitting pill
will be revisited if GP say’s it ok, I took the dose too high, My decition as I wanted to take the med trial as far as I could, silly mistake.
I believe it may work if I stay low next time.
epilm 5 months,200mg
helped with symptoms, made me sleep all day at only 2oo mg
Efexor, 75mg
on now, it gives me insomnia and isnt good for my hypertention. however my symptoms are much lower on it, I still migraine twice a day.
I was only diagnosed 4 years ago with mav.
I spent years wondering in the dark , being told I had MDds.
Hope this helps.
jen
Well, it sure sounds like you’ve given many drugs a fair trial, but there are many out there that you haven’t tried yet. As you know, it can be the difference between one drug and another within the same class that clicks with your particular chemistry and may do the trick. Do you take anything for sleep? I see that you have had troubles with sleep on many meds, and sleeping for me is a big trigger. Paxil isn’t supposed to hit norephinephrine, and many find it sedating. These
neuro drugs have so many mysteries to them. I struggled on a very low dose of Effexor, but seem to tolerate Cymbalta…they are the same class of drug, with Cymbalta being more balanced with Serotonin and Norephinephrine. Effexor at the lower doses hits mainly Serotonin. Have you tried Celexa? It has worked well for many, and also considered first line med by some prestigious doctors who specialize in MAV. You could also try to blend some meds to get the benefit from two groups.
I personally had a great immediate result from Remeron (Mirtazapine) and it really helped my sleeping. I only took a low dose. It pooped out rather quickly on me, but that is just me, and not everyone has that experience. But it was great while it lasted.
I hope you don’t give up hope. There is a lot of information on this site and with some of the books recommended, I feel I have learned as much if not more about my illness than any doctor every told me. We end up being our own advocates.
No one knows YOU better than YOU…find a doctor who is willing to really listen and help you decide on a course of action. I have one here in Las Vegas…he is very esteemed but humble…he knows he doesn’t know everything and we co-create plans of action. He always considers me feelings, and my fears and lets me have a hand in my treatment. There are some good docs out there…but like trying to find a mate…it takes some searching.
Please keep us posted.
Kelley
Jen - thank you very much for answering my question. I am so sorry that you were misdiagnosed for such a long time. I hope this year brings you much better health and finding the right med for you. it is such trial and error.
Kelley - good point. we ce rtainly do have to be our own advocates.
Kelley,
Very well stated. Thank you for writing that for us to read. I agree with you 100%.
lisa
Hi Kelley,
I havent stopped trailing meds Yet,
and wont until I’ve found the best med, I dont want to do anything quickly “as the body cant take it”.
One med at a time, over a period of many months.
The thought of giving up on effexor and going thru another withdrawal is not an option with my state of mind at the moment. :shock:
I know there are hundreds of meds out there.
I’ve been proactive for 4 years now, studying mav, and slowly but surely becoming my own advocate.
My normal gp is a fantastic Dr, unfortunatley I cant always see him when needed.
kelley , I dont take anything for sleep right now, as I’m ditching my benzos , they don’t work for me.
Thanks all for youre thoughts and kind words. 
jen
Jen,
Don’t you wish you had Janet Jackson’s doctor. We would all be cured in two weeks. 
Seriosly though, I am in a similar boat to you. The docs don’t know what to do with me any more. I haven’t been through all of the meds yet, though I have recently cleaned my system out, and been through the withdrawals you talk about. No fun at all! My dizziness is triggerd by almost everything, and my balance is so fried right now that I am almost housebound. I am not a fan of the panick stricken faces when I fall, which is guaranteed these days.
Yeh Brian , I’ve just had a gut full! 
I’m really over it to be honest.
Tired of rocking and feeling out of it 24/7
I’m such a teary cranky old lady already.
jen
Hi Jen,
Understand how you feel. I have had this for over over 20 years and the preventatives I have tried are over 20 too.
Tried 4 of them this year, 2 new ones and 2 I have tried before. They made me worse and I wondered “how much more of this can I put myself through to try and get better”.
At the beginning you have more hope but I am coming to the conclusion that for me, this is my life, after all, its been like this for the last 20 or more years.
Christine
I’m sorry you’ve been suffering for so long too Christine.
I go through so many different stages , trying to ingore it, wishing it away, denile.
And every now and then I get so upset I can’t cope.
These med trials take so much out of me, My brain is frazzeled. :roll:
I’m sure things will get better for us all.
love to all.
jen
Hi Jenny,
Sorry to hear you are having such a hard time. Is Effexor still helping? Is it 50% or more or less?
I’m 50% on Celexa, I’m planing to come of it and try Zoloft…Did Zoloft help your dizziness a lot?
Emma
Hi Emma,
Effexor is still helping a little with symptoms of neck pain, and dizziness is better,
and I can go shopping under fluro light and visit family and friends .
it hasnt taken me as far as I need it to.
had good results on zoloft the first time around, but it didnt help the second time.
I was on high doses the first time.
I bit the bullet this afternoon and am trying topa again .
jen
Jen. I was really hoping that effexor would do the trick for you; reading some posts from you I know how long you’ve suffered and how much you’ve tried. Keep trying, is all one can do I suppose.
Life is hard, but it is better to have lived and suffered than to not have lived at all. A bit of a cliche, but it helps me when I feel down =)
Best of luck - Mikael.
Thanks Mikael, so true, How have you been?
I havent been posting for a long time, was a bit over the internet, just wanted some time away from it all.
have you been doing ok?
had any help with any meds?
hope so.
jen
Jenny,
Sorry to hear things are difficult again. Hang in there, easier said than done.
After a failed trial of Effexor at low doses, the rocking became so violent that I fell from a sitting position. Don’t want to go any high if that is going to happen.
At this point nothing helps so I have decided to try to go a year without any meds, increase my physical activity, and watch my diet. Maybe then I will trial meds again but it seems doing one after another is just on helping me.
Best with the topa trial. There has to be more to life than this.
Sally
Hi Sally,
I understand why you’d want a break from all this med trials, I wonder what it’s doing to our brain, trying one thing after another , can’t be good.
Sorry to hear you had such a horrid time of it.
I’m itching pretty bad , after my first 1/4 of a 25mg pill yesterday morning, crawling itching skin.
my head felt more stable on 1/4 , but this itching is too intense.
Do I want to stay like this , NO.
we are the lucky ones arent we.
best wishes Sally
jen