Defeated

Its getting kinda rough and been feeling defeated lately…I know I had mentioned the few times I felt like I was going to pass out?? Wel it happened again twice on Thursday and I went to go see my primary care physician she said she was concerned about my low blood pressure and she didnt want me to increase the nortriptyline again till I have gained at least 5lbs and that that 5lbs brings myblood pressure up more…I talked to my neuro-otologist and he said the episodes sound more vaso-vagal and blood pressure related than migraine related…They say with vaso-vagal that i will grow out of it in time cause my blood stems will start to stiffen up and my blood pressure will rise but i mean damn! I had just come to terms with the MAV and trying to beat that and seeing the counselor to control my anxiety and now I am terrified I will pass out everytime I stand up??My life is really at an all time low and I just feel like giving up so any advice anyone can give me would be helpful…anyone every suffer from vaso-vagal?? any tips or comforting advice??

Sorry … only comforting advice from me.

Do you trust your doctor? I saw a neuroto a couple times but after the second he sent me to a neurologist because he said the neurologist was more equipped to deal with migraine than he was.

Is the nortriptyline doing any good for you? Personally I couldn’t take it because it made me too jittery. I’m finally off everything except Topamax and feeling a lot better … as long as I watch what I eat. (That’s not as often as it should be.) For me, getting off Effexor was the best thing I could have done because I finally feel alive again. At one point early on, I thought it was great, but after a few months … well … it just didn’t work.

Sorry but I just don’t want to read through a lot of past posts for the information. If you wouldn’t mind sharing briefly: what are you on now? What have you tried?

And lastly, what happens if you give up? Really … you say you’re ready to give up, so what does that mean exactly?

yes i trust my neuro-otologist in boston so i trust i have the migraines and when i alked to him about the fainting feeling he agreed with the ER doctor i saw that it is vasovagal reflex and since my blood pressure is so low maybe it would get better if i got the blood pressure up…my primary care is worried about the nortriptyline messing with my pressure but the neuro-otologist says he doesnt think it is…i am on nortriptyline 20mg…I went from 50% to 75% on the nortripltyline 10mg then had huge setback that set me back to 25% and i think i am just finally coming back from that so I do think my nortriptyline helps and i am still on such a low dose i want to give the med a shot but PCP doesnt want to up it to 30mg until i gain more weight and bring my pressure up…i dont know i am just really down life shouldnt be this hard you know??? i am 26 with 2 little kids depending on me and i have been dealing with MAV for 1 year and 9 months now and now i have a blood pressure problem on top of anxiety WTF?!

Yeesh … I hate when doctors don’t agree. It leaves us feeling pretty … out there. I wish I wuz a doctor, then I could fix all of us!

I wish I could come on and tell you all that I am doing better but I just cant and I dont get it and I am incredibly angry…from like April till Sept I wasnt doing too bad then Sept hit and I feel worse than when I first got the MAV back in March 07…I kept telling myself this setback will let up soon and it has been 2 (almost 3) months and I am still so frigging sick…I dont get it and I have certainly lost any faith I had that I could beat this thing…And with this Blood Pressure crap I am so depressed now and just want to crawl under a rock…at this point I dont see me ever getting back to 75% let alone normal…and noone else seems to suffer such a long intense setback on these boards so why me? Whats going on here??

— Begin quote from “DesperatlyDizzy”

and noone else seems to suffer such a long intense setback on these boards so why me? Whats going on here??

— End quote

Actually it seems many of us have seasonal symptoms. I have “only” have my life totally ruined for 1.5 year, so I’m not really sure about my cycles… yet. However, many others say they are a lot better some parts of the year… and if I do have these swings, then september to march is where I’m worst.

Side effects for Pamelor (nortriptyline HCl)

Cardiovascular -** Hypotension** (low blood pressure) hypertension, tachycardia, palpitation, myocardial infarction, arrhythmias, heart block, stroke.

Psychiatric - Confusional states (especially in the elderly) with hallucinations, disorientation, delusions; anxiety, restlessness, agitation; insomnia, panic, nightmares; hypomania; exacerbation of psychosis.

Neurologic - Numbness, tingling, paresthesias of extremities; incoordination, ataxia, tremors; peripheral neuropathy; extrapyramidal symptoms; seizures, alteration in EEG patterns; tinnitus.

Read More Here:
rxlist.com/pamelor-drug.htm

Wow - Heather! Those side effects might give us something to think about here, DesDiz.

My husband is the MAV sufferer. I just wanted to let you know that you are not alone in the LONNGG bouts of this terrible stuff. At least once a year he has an episode that lasts about 2 months. Most of the time it is 1-2 weeks at a time with 1 week to several months in between. His symptoms are extreme fatigue to the point of barely moving from the couch or getting dressed for a week at a time. Also motion sensitivity both visual and actual physical movement. Sometimes light sensitivity also.

After finally “sort of” getting a diagnosis after a parade of doctors, a neurologist prescribed amitriptyline to be used when he is having symptoms. Don’t know why they don’t want him on it every day, but I don’t think he would take it all the time anyway since it makes him zombie like for the first few days.

Anyway, that’s our story.

— Begin quote from “joy”

Wow - Heather! Those side effects might give us something to think about here, DesDiz.

— End quote

Nasty crap isn’t it? :shock:
There’s nothing that irritates me more than when a Doc says “ohhhhhhhhhhhhhh it’s not from the medication” What nonsense.
It’s easy to do your homework on the net, so I have zero tolerance for lazy docs who write scripts for people without knowing the side effects.

Heather

Do you normally have low pressure? That is something I have always had is low blood pressure , mine is normally 90/60 and that is all the time.

That is one reason I am very unsure about going on some of the medications that states this is a side effect because that is one thing I do not need to change. I am small also so I put a little extra salt in my diet to help with that. Not a lot but some.

Plus I eat five to six times a day small meals to make sure and keep my diet in perspective. I have to be careful with any type sugars since I have reactive hypoglycemia.

There are a lot of other medications out there that do not have that as a side effect seems it would be worth a try to ask about chaning it if that is the culprit. While doctors do not always know how these medications work on every person you know your body better than anyone and should make sure whoever you are seeing understands how it may be effecting you.