Hope

I have been feeling really low recently and kind of giving up hope a little. However, I was just looking through the ‘back catelogues’ of this site and realised that tons of people who used this website (even as little as six months ago) no longer use it.

I can only assume that most of them have got better and no longer feel the need to use the website. Would you agree? Does anyone know what has become of any of our old regulars?

Becky x

yes, Becky, we’ve all wondered the same thing. Do this: search for thornapple’s posts. It’s an amusing and educational story. If you don’t come up with it, or it’s too laborsome, i’ll tell it to you later :slight_smile: I love telling that story, i’m afraid the others are sick of hearing it from me.

Julie

I know that I will disapear for a couple of weeks or months when I am feeling well and having little difficulties in my life do to MAV. I will pop back in and start posting more regularily when I am having a flare up and need to talk to people that are experiencing what I am. At these times I actually get more out of providing support to newcomers or other people that are still struggling to figure out how to cope. I try to pass on what I found on my own without the assistance of doctors or medictions. I know that some of my self treatment program doesn’t jive with what the doctors who really know what they are talking about when it comes to MAV, but it seems to get me by.

Julie,

I have now read the Thornapple story and yes it does give me hope! Maybe in months and years to come, people will read my posts and say “well, she got better so there’s hope for me too”.

Becky

Becky,

i wrote thornapple a PM when i first joined this forum, wanting to know how she is doing. it still sits in my outbox. i’m leaving it there. Maybe some day she will pick it up :slight_smile:

I’m pretty sure, if she were feeling bad, she would be back on board, don’t you think?

Julie

Becky,

when Jen logs on, she’ll give you a hopeful story. i’ll let her tell it.

I know I complain sometimes, because I want my life back, and this illness will always be shocking to me, but a year ago I couldn’t get out of bed. It’s incredible what treatment has done for me. I can’t believe I’m actually sitting in my chair, not having to swivel like a crazy lady, and hang onto the desk, squinting at the monitor sideways, because I couldn’t dare focus on anything, and construct a sentence that actually makes sense. All the while not fantacizing about ways to kill myself in order to stop the psychic agony.

And for me it never had to be that bad, it was because i had given up on doctors, and went to see a homeopath (waving dead chickens was next on my list). When I saw her i was still functional, taking ballet 3 times a week, socializing, etc. The remedy actually worked great, felt better than i had ever felt in my entire life, until she upped my dose. she OD’d me on a homeopathic remedy if you can believe that! that’s what crashed me and it was horrendous, i went to hell and back and survived it. I think I know how Frodo felt. It’s something you never recover from. The whole ordeal has changed me.

Anyway, as usual, i digress. I’ve been to hell, looked suicide in the face, turned a corner and made a come back. It’s been a long haul, but on the other hand, when you think about how bad i was just a year ago, it’s incredible how much better I am today. A year ago I couldn’t take the dog outside because of three little steps. I couldn’t do the laundry, or even put it away. I couldn’t even make the bed. My husband would have to help me out of the tub. the bed swings were violent. the floor was whipping under my feet. i would lie in bed with my eyes closed because it was too scary to watch the world whip around. And i didn’t know why this was happening and why it just kept getting worse.

Becky, you just need to find the right med. Neurontin did just a little bit for me, but it was enough to get me going and i’m staying on it. Klonopin did a great deal for me. Topamax has done a great deal for me. I still have some hope for Effexor, i may not be at my therpeutic dose yet.

So, even though i’m not cured, i would consider my treatment thus far to be quite successful. I want to be alive and i have a lot of life in me. I’m doing things i enjoy, cooking, and even though I’m only walking, not training for triathalons - it’s not something I’ll complain about on my death bed.

On Page 5 of this forum there is a thread “Has MAV Helped You Find a Better Way” Go there and i think you’ll find some hopeful stories.

I’ll see if i can find more hopeful threads for you. I know they exist. Oh, I know, there have been 2 or 3 people who have had great results with Effexor within days of hitting 37.5 mg, i just wasn’t one of them. Dizziness - gone! Joy was one of them, Meghann was one of them. I thought there was a third.

Julie

Hi Becky,

I’m new here and when I found this site last week, I couldn’t look at the computer screen for longer than 5 minutes at a time. I’m having a good two days and am reading more now. I’m looking for your story and cannot find it. I did see your picture at the very beginning and thought, “Look at that sweet face. I know exactly what she’s going through.” Here you were at a wedding looking great, but probably feeling rotten. And knowing that anyone that looked at you had know idea of the hell going on inside. Gosh, I feel that way so much. I look normal and the struggles behind my face just don’t show themselves.

Anyway, seeing your face and other people as well that I know are in my spot, gives me hope. Feeling understood at last, gives me hope. Sometimes human connection can feel so healing. I am so sorry you are feeling low. I’ve battled that feeling for more than a year.

I would love to know your story. Your age, how this came on for you, etc. I’m almost 4o and the mother of 2 small children. I started noticing real changes in my energy levels and with my night vision almost 2 years ago. I had a few bouts of dizziness that I thought were allergy related, and then last September, the bottom feel out. Since then, I’ve been trying to put my life back together as I know everyone else here is trying to do as well.

Best to you and I hope for hope, for you and everyone who is suffering from this and all things chronic.

Molly

Hi again,

I just found a lot of things about your history under one of your posts, so don’t feel like you have to go back over all the details. I’m learning to use the search function a bit more to find things out.

Hi Becky and Molly.
One of my favourite members said to me the other day,
Jen now you are feeling better from the topa, your not going to disappear are you?
Well I knew I wasn’t going anywhere, this forum is my second home.Like everyone here who has had friends and family turn their backs on them during this awful illness, I’ve had this also

but it’s good to see people that have left to get on with their lives, yes! they must have gotten better hey?
thats good news. :smiley:

My heart has been broken so many times by mav,
I’ve at times had to live a self-imposed kind of hermit like existence,
that’s hard for someone who loves people!

This forum has helped me connect with people.
My husband said to me two weeks ago, now your feeling better!
I hope your going to start living your life a little more and try to forget about your illness and get some real friends, not just Internet friends
This angered me, and I said my mav friends are real friends in fact their better friends than I’ve ever had.

What Molly just said about seeing Becky’s photo is soooo right.
Know one can see our pain.
And she looks as beautiful on the outside as she sounds on the inside, with NO obvious telltale signs of her hellish soul destroying illness, just a Happy healthy glow.

I have no intentions of getting better and just disappearing; I would miss you all too much.
Yes I will be getting a life,
I’ll always have time to log in and find out what progress you are all making.
Who knows, tomorrow my anticonvulsants might Conk out?
It’s been known to happen.

Oh also
A while ago, I posted 100 meds for migraine. It’s an older post.
There is many to choose from
So we don’t have to give up if one doesn’t work, we can move on to the next one.
The only med MAV’ers should’nt touch as far as I know! is tryptans as they can cause restriction of the blood flow to the vessels.
I’ll see if I can find it for you and bump it up in the posts.

I’m sorry I haven’t been here for most of the newer members this past month
I’ve been going through my own personal Hell.
Withdrawing from and SSRI (Zoloft)
It was a terrible withdrawal.
But I’m better now.
I tried during this period to post some hello’s but sadly realised my posts were crappy!

Luv to you all
jen

Thank you so much for your replies. You are very kind with your compliments! It really does help to know that other people know what I am going through and are walking the same path as I am. I am the kind of person who thrives on connecting with people and there hasn’t been too much of that recently because no-one I meet in the ‘real world’ has ever been through what I have, so I have felt pretty alone (even though most of my friends and family have been supportive).

I got a diagnosis reasonably quickly after I became ill (in February - about 4 months after I became ill) so I thought I was doing great guns and would be better in a similar period of time. However, I have struggled tolerating some drugs and then another only partially worked and then I had to wait to see a specialist who could ‘tailor’ my medication. I just seem to have spent the last six months waiting around, which does not comfortably with me!

Molly - I hope you got my story ok. If you want to ask me anything just send me a PM, I love chatting to people! Have you started the Topamax yet? Do you think the improvement you’ve seen over the last few days is due to that?

Becky

Becky,

I understand your frustration. I found this forum and finally understood what it was that was going on with me, was a feeling of Yureka!!

Now I just needed to find somebody who would diagnose and treat me, but at least i had a direction.

My first doctor was amazingly disappointing in his prescriptions so i guided him with “dr. hain says…” which i how I got on Topamax after six months of seeing this guy, but with no dosing instructions. that’s how people get into trouble with Topamax. It needs to be taken with a very careful watch on SEs and knowing what to do when they come. That’s when I found out I could switch to Hain. But now I’m in the same holding pattern. I’ve been on Effexor 37.5 for 4 weeks with no effect and i don’t talk to him for another 3 weeks which feels like an eternity. He’s a conservative prescriber, which is how he keeps you out of trouble SE-wise and doesn’t have patient bailing out of meds, but the process does require patience, patience.

So just like you, getting a quick diagnosis, maybe feeling some excitement at a quick cure, once I got to see Hain i thought he would take care of things in no time :!: No such thing, not with me anyway. i have too many contraindications, to too many meds, i’m too sensitive, so i have to go slow, and it’s just not his style, which is why i love him to begin with.

So we sit and we wait to see if these meds will work.

But we have each other, don’t we? And you still have lots of options. And one day you will be well.

Julie