Frustrated as heck

Yesterday was a great day almost felt normal even drove and went to the gym and everything now today i’m back to feeling dizzy and rocky and head congestion and eyes blurry. I don’t get it. I hate this illness. Why can’t i ever get more than one good day in a blue moon!!!
it makes no sense to me. I know there is something in the air already cuz other people are suffering from allergies too. only thing i can figure is yesterday was better cuz it snowed some the day before. the trees start pollenating early here. gotta change allergy meds again i guess. i don’t know what to do any more i really don’t.

chris

I was sooooo happy yesterday felt good at work - mind clear and all - trained a couple of people, then went to the gym after work and got home and felt good now what happened? I don’t understand. i am down today. I just don’t understand no one does that i talk to either it’s soooooo strange. Doctors don’t even get how i hve been this way for 30 years.

chris

I feel for you chris…know exactly what you are talking about. (mind you, i have never had a near 100% day in the past 4 years, but i do have good days followed by pure junk.)

i try to be analytical about it…but the dots just don’t line up for me.

someone at work today was complaing about a cold they have had for a whopping 3 straight days…i wanted to punch him in the nose ha :smiley: (a whole 3 days…boy, life just isn’t fair for that guy)

todd

thanks for replying Todd. I know what you mean i’ve been sick 31 years now. i’d rather have a cold at least there is an end in sight. I had a cold for Christmas and didn’t get dizzy at all!!! just felt crappy but not dizzy. I’d rather have a cold than this crap any day.

i’m soooooo tired of it.

i just want to cry now - have to drive home after dr. appts and hope it calms down before then. my allergies (dizzines) gets worse in the Spring so i’m scared

chris

I feel you Chris. I just joined here and I don’t even know if I have MAV, but I am constantly losing focus, feeling off- balance and getting lightheaded. Monday I felt great, everything was calm and still and like you worked out and felt amazing. Today, I almost passed out during lunch. I have no idea what’s going on but I just wish it would stop. I know my not feeling well dosen’t make you feel better, but I will give you a shout out during my daily rant wishing this would go away. Feel better man

Deekon

Oh Chris, sorry you’re feeling so down. I hate this thing too - you have a good day and start looking forward to things and then WHAM it slaps you in the face as if to say thats enough pleasure for you! You’re right that no-one understands, but thanks to this fab forum you can rant on here and we all understand. Hope you feel better soon x

What a bitch. Feels like getting my feet chopped from under me, when a good thing suddenly ends. Only thing I can say from my experience is that it probably will feel better if you can just contrast the dizzy and the good–at least the good day is somewhere there in your memory–than contrasting the dizzy and the crappy. Ya think? :?

I had the same. Yesterday, was so dizzy all day, couldnt do a thing. Today lots lots better. Makes no sense. I can only think I ate something that didnt agree the day before yesterday or spent too long on the computer. I get the same if I have gone shopping for too long the day before etc. Its like you have a good day then you pay for it. :roll:

Christine

Thank you all so much for replying. I’m soooooo sorry we are in the same boat. Feels like i’m on a boat today really.

It’s so nice that we can talk and relate because no one understands dizziness unless they have had it. Today a woman at work said - you worry too much - just go with it. what the heck does that mean. i know she meant well because i was worried about driving later in the day and yes i am a worry wort but people don’t understand that don’t have this. they try but they can’t unless they experience it.

Yest went to dr. and today therapist - was worried therapist would shoot me for not being able to tolerate the celexa - he was disappointed but he understands - i have a physical problem - my dizziness but also a lot of anxiety because of it so he’s going to help me work on that without meds for now and i told him i just started hormones a week and a half ago and he said that may make me feel better :slight_smile:

i told him did some driving over the holiday and did pretty good a couple of times but one time was because i had a cold so i didnt have allergy dizziness so i was fine. it’s so strange how i dont get dizzy with colds and do with allergies.

i even saw a woman today about sleep assessment. she has given me some pointers but of course menopause is a huge culprit there but after taking to her then therapist it all kinda boils down to my anxious personality and my brain always going a million miles an hour.

Oh almost forgot a have a family member who has health issues also and was wondering if subconsciously not intentionally that i want to stay sick because i always have been and that’s why i can’t take medicine. i dont believe that cuz after yesterday’s feeling so gooed i was in hog heaven for a day!!! therapist didn’t really think that was true in my case anyway. i soooo want to get well. just drug intolerant. hate meds! valium i can tolerate.

i hate feeling like i’m 90 years old and being dependent sometimes on rides. i was alwys super independent my whole life so this is strange. I told the therapist i feel like a buden to my BF - of course crying about all this stuff - it’s good to get it out i think.

thanks again all for listening.

i hope everyone feels better tomorrow!!!

c

Man, is this a bad week for everyone? I feel like sh*t as well with post-trip comedown. My sleep was thrown out badly leaving NZ and I’ve not recovered yet. Aches and pains, derealisation, depression, dizziness … what a piece of work this is. :evil:

Wow, I’ve been reading all the posts. I’m so sorry guys about how you’re all feeling. What a bitch MAV is. So unpredictable and often unmanageable. However, I usually feel pretty crappy after the holidays anyway…
Chris - I can honestly say that the anxiety you experience is normal around “what’s going to happen now, later, etc. etc. etc.?” because we just have so little control over the impact of dizziness, neurological symptoms, fatigue, etc. Normals just do NOT get it… they cannot. Honestly, how can a person with MAV confidently or reliably plan or execute parts of life when they don’t know if they can show up for it or they will be trashed for it ??? That’s been my exact experience for a number of years. Though I’m doing much better, I’m definitely not in a place where I have let go of the fear and wariness of the limitations from MAV… I’m just still rather freaked out that I can’t show up or I’ll be really trashed when I do (because it’s happened so often before). I still have Migraine Associated Vertigo Stress Syndrome. Scott is right - what a piece of work this condition is. And even if you do better, it manages to stay with you.
Gail

— Begin quote from "iwantjrm"

I don’t get it … it makes no sense to me.

— End quote

Chris – this explains why you experience the fluctuating symptoms. From Steve Rauch:

— Begin quote from ____

The chance of having migraine symptoms on a given day depends on two things: the patient’s threshold for symptoms, and the total load of migraine triggers that day. You can picture this like someone standing in a swimming pool: if the water level is at their upper lip, every little ripple will put them under water and they will suffer. If the water level is down at their waist, they can tolerate lots of sloshing without going under. Some MAV patients are living under water! Adopting a migraine diet and lifestyle “drains the pool” – i.e. it lowers the load of daily triggers. If a month or two of this approach fails to achieve adequate symptom control, addition of a migraine suppressant medication “makes you taller” – i.e. it raises your threshold for symptoms. By adopting one or both of these approaches, most patients (maybe 80%) can achieve a “zone” between their trigger load and their threshold (like the zone between the water level and the person’s nose) where they can live their life. This does not mean symptoms never occur – a big fat kid could jump into the pool and you might take it in the face – but it does mean that disabling symptoms are few and far between.

— End quote

Scott

thanks Scott i always start getting sick this time of year allergies are my big trigger. i haven’t found food triggers yet but pretty much have given up a lot of stuff so trying to follow migraine diet for most part. i couldn’t take the AD so i don’t know what i’m gonna do except hope that my therapist and the hormones will help some but i don’t know. i have to change my allergy meds also.

anxiety is my big problem right now so i need to work on that. i used to get sick like this - have for 30 years but never had this much anxiety before. i worry about everything.

grrrrrrr

chris

Why not try 5HTP or St John’s Wort. Both can be very effective for anxiety. Let me know if you’re interested in these more natural treatments even though, like all meds with active molecules, they can have side effects.

i talked to my therapist about those and he didn’t sound too thrilled he like you said they have side effects too. he doesn’t know why i can’t just take an AD but oh well.

i am feeling worse i’m super congested and dizzy so i know it’s that time of year when the trees start pollenating. i’m gooing nuts cuz i can’t figure out what to do or take i’m sick of living like this. it shouldn’t be this bad. why can’t they at least fix the allergy part of it.

i hope the estrogen isn’t making me worse. it seemed like i was feeling better for a while there. i know that sometimes it can cause congestion and stuff but who knows hopefully when i start progesterone i’ll be less anxious :slight_smile:

c

I just had the unpredictability of this. I was doing pretty good today once the early morn was over with and i drove to the grocery store at the end of the work day and did okay but then when standing in line at the checkout i got dizzy. i stil feel dizzy. i was outside talking to a neighbor right before that so it prob set it off - it’s getting warm during the day so i swear pollen already. I just wanna scream.

It’s awful to not be a le to be outside any more. i used to be an avid bike rider now i barely get outside in the spring/summer - frustrating

chris

Chris, I think you need to accept that this is the ups and downs of this problem. No one here enjoys it, it plays havoc with all our lives but you need to just understand that it is what it is until you are ready to treat it and stop letting it get to you all the time.

We are all in the same boat. It sucks but you just need to deal with it as best you can and letting it upset you on a daily basis and coming here to complain about it is not helping you. When you start to feel like this try to sit, close your eyes, breathe deeply into your stomach and think about pleasant things.

Hope you find relief soon.

sorry for complaining :frowning:

It’s not about the complaining so much but about letting the fact that you don’t feel well everyday get to you. Assume you are not going to feel well and then work around it. Make the best of the day around not feeling well.

A positive attitude in a crappy situation helps a lot. Someone said today that the only disability is a bad attitude. I am not saying that you have a bad attitude just that It is a good saying and something to live by for all of us.

Have a good night Chris.

Hi Chris,
You have had this mongrel dog for that many years?? OMG! I thought I was a long timer!
I feel for you.
Don’t be too hard on yourself about dumping the SSRI’s, they are hard to tolerate for many of us, you either do well on them or hate them. (I hate them)

So you’re still playing around with the HRT?
That’s fantastic.

I was in hospital this morning (for something else)
Dr (gastro) said,…so your one of those weird ones, atypical?
He was genuinely interested to hear about my migraines, as it was on my files.
He said, I’m surprised HRT has helped and not made you worse, he said it can make some migraineurs worse.

I explained that most meds work differently on me, sometimes with the opposite effect to what is was designed for. Lol
He suggested that my “bowel problems” were directly related to my migraines.
Nice man, with gentle fingers… THANK God! Well my Butt thanks him.

Have you tried the nasal sprays for allergy?

Hope things pick up for you on the HRT, it would be great to knock Mav on the head without all the nasty AntiD’s side effects, Hey?
Might take a few weeks of fiddling though Chris, before you get the benefits.

Lot’s of hugs.
Jenxx