Having a shocker

I’m really not having fun at the moment.

With my increase in dizziness from last November, and my Interstitial Cystitis coming back back in Jan its adding to the misery. Its a really double bullet managing both (like I did in 08/09)

I haven’t had IC this bad or long in 4 years, and this flare doesn’t look like it will subside quickly. In that time I’ve also had a week of savage IBS.

Its not ideal while working and travelling, on top of my head symptoms. You go through that useless cycle of wondering what set it all off.

I’ve been on Nori for 6 weeks now, and 20mg for the past 10 days. I’ve had some better days, but it’s still below par in general. Ive thrown 10mg of Citalopram in the mix to see if it helps with my IC and dizziness. Not great success yet.

Even after 10 years with all this junk in various forms of well/unwell phases, it never seems to end. I look at the next 10 years, and wonder if its going to be the same. Huge impact on life, relationships and a potential family. Im amazed I’ve managed to progress and hold a career together. Its the only thing I can cling onto.

Yes its pathetic self pity, but I’m normally incredibly positive, rocksteady (no pun) and solid. You know somedays you just feel totally beaten?

Here’s to a better tomorrow.

do you think you are feeling more poorly because you went off the celexa? hopefully adding it back in will help. i totally understand about dealing with more than 1 problem at a time- I have fibromyalgia and severe anxiety/depression/ocd, none of which i can treat bc the meds make the mav worse. Honestly its impossible to function if you have mav and something else major. You should give yourself credit for being able to hold down a job and have a life, you have my complete respect, I have been able to do neither since getting mav in 2010, my life has completely stopped. Try not to think about what the next 10 years are going to be like- just try to focus on today and maybe tomorrow and that’s it. If you look too far ahead it will be so overwhelming and depressing it’s just not a good way to go.

You can also look at it this way- you probably have lots of friends with zero health issues and envy them- i know i do. but the truth is everyone is one potential random illness or accident away from disability and/or losing the life they once had. Nothing is promised for tomorrow. In some ways for ANYONE to try to plan 10 years down the line is ludicrous, because we just have NO IDEA what is going to happen next! Just today I was driving and within the span of 1 minute 2 people pulled out right in front of me, not leaving enough room in traffic to pull out, and I had to slam on my brakes to avoid an accident. Thank god both times the people in back of me were also able to stop and didnt rear end me. The second time, this lady pulled out so close in front of me that I had to brake so hard that I skidded on the pavement. I have never had such close calls in my life, totally not my fault, and they happened literally within 1 minutes time. My point is you just have NO IDEA what could happen and life changes from minute to minute.

It’s hypocritical for me to say this because I always used to be such a planner/worrier/let’s look into the future type of person. This illness forces you not to do that because otherwise you will drive yourself crazy with what ifs and worries and severe depression. Just try to do the best you can with what you have today. Again easier said then done. From your previous posts it sounds like you are young and work full time and travel and date and have friends right? that is amazing you need to give yourself credit for that. i also know its hard but try to be grateful for what you can do because it sounds like you can do an awful lot despite having this problem.

I don’t know how much that advice is worth but its just my 2 cents. I am young too also I am 30 and my life as I knew it has been completely shattered. I basically live in a semi state of denial that this is even happening to me and that it all resulted from a stupid completely preventable accident just to be able to get through the day. Just do the best you can and try not to compare yourself to others your age or to your old self (that last one is so hard for me). I try so hard not to go on facebook because it always makes me feel worse then I already do, without fail, so I try not to but I can’t resist sometimes.

I hope this helps and keep us updated about everything!

Thanks for your reply Sarah, and putting it all into perspective. You are right, you can’t focus on the future too much.

Ive also had many periods where I have felt better, so Im sure it will come again.

I’ll see if Citalopram makes any difference. If definitely kept me at a level, but didn’t really sort everything out. I was hoping Nori might work, but so far it’s not made much difference.

I hope you are doing better.

Have you tried Atarax (hydroxyzine)? I know it’s used to treat IC, and some patients do have success with this medication. It’s an antihistamine, so I’m wondering if it would also act as a vestibular suppressant to help with your increase in dizziness.

Hey Luke,

Sorry to hear you’re having such a shit time of it. Always the way when we mess around with meds it seems.

I guess all you can do is white knuckle it while you fine tune this again. At least you are still able to pull off a talk in front of a crowd. In other words, it doesn’t stop you from doing the bigger things. I think we are similar in this way … hell or high water I won’t let it steal my life away if possible.