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Hi ladies,
I have been in treatment with Dr M for nearly 2 years and I've seen nothing but good things along the way. My IC has improved so much that I have days when I almost forget about this condition and other things have improved in my overall health as well. I'm currently on list 4/5. it's not easy for me to write this post but the last couple of weeks have been a total nightmare for me. It started off one afternoon after waking up from a nap that I had what felt like a panic attack (pressure/burning behind my head/neck area; nots in the stomach; felt like passing out or dying; stomach cramps). At first it seemed like it went away on its own but then symptoms started to increase and linger for longer periods of time. I also had sadness; felt like I was going to lose my mind; fear; very emotional; decreased appetite and this Monday it turned into full blown insomnia. Each time I try to sleep it's either I get a not in my stomach or a twitch and it wakes me up. The symptoms are very similar to the ones I had 13 years ago when my mom passed away and my calcium/magnesium were low. I had Ca/mg shots intramuscular. However this time my calcium levels is within normal ranges. Dr M believes that it is anxiety and was triggered by an argument I had with my hubby. Today I went to ER and they said I had low potassium so they gave me supplements and fluids IV due to elevated heart rate. Dr also gave me 2 pills of Ambien. I have never taken sleeping pills and dr M said that is like poison. She recommended valerian root but not for long term use. I'm just so desperate for some rest. I'm really devastated by this as I was doing so well and everyhing came crashing down. She currently has me on 4 RP; 1 mega 1 vitamin d. My bladder has been a bit cranky due to all the protocol changes. Dr M assured me that it is very common and that my body will go back to normal but I'm losing hope. My anxiety is bad - tried to cope with it but it's nearly impossible now that my sleep is compromised. Can any of you relate? It's really hard to stay positive and think this is only temporary. I understand if it would happen in the beginning of the treatment but not after so long.
Hugs to all!
Hi - sorry don't know your
Hi - sorry don't know your name. I can so relate - I've gone through horrible anxiety and insomnia - probably happened two years into treatment. In desperation I strayed from Matia's protocol to try sleeping pills, the dreaded benzos, the more accepted Elavil, a prescription for pot, supplements from a natural path - who knows what else. While I can say with certainty that none of these helped - made my bladder, and often anxiety, even worse, it seemed like I just had to try it all before I hit some sort of acceptance that I had to commit to this process, no matter how impossible it seemed and was. I think around this point, I checked myself into an out-patient mental health program through Swedish. For two weeks I got buzzed into the mental ward for the day - 9th floor. Of course, they too wanted to dope me up - tried a few things but my bladder rebelled. I don't have too much positive to say about the program, went through it during horrible insomnia - however, it was a distraction. So, you are talking to someone who can relate to the hell that you find yourself in. Here's the thing, you can find your way - even if your path strays out of your need to search for some sort of damned answer that's a hell of alot easier. I'm not going to tell you that I'm 100 percent a poster child for mental health. However, I sleep now, I know myself better, I'm in an incredilbe counceling program called Internal Family Therapy and my bladder rarely bothers me. Again, I get it - it gets better - you can do this - and yes - it sucks
Hi- I have/had IC and have
Hi- I have/had IC and have been doing pretty well....comes and goes but I seem to be managing and way less scared when I have a little pain. Anyway,,,,I am also a pharmacist and I work in a psych hosptial. The meds are not good, except for a last resort. Try reading Mercola.com for anxiety and insomnia. Here is a link to a tapping method to help with anxiety......https://www.youtube.com/watch?v=IWu3rSEddZI. There are lots of articles and videos to help. If you don't sleep for 3-4 days - that gets scary...kind of an emergency. Amitriptylline helps and use the lowest dose possible for the shortest time you can. It is an antidepressant that causes sleep and dry mouth....thats why we give it at bedtime. Another suggestion is to see an endocrinologist.....or try bio-identical hormones if you are pre menopausal. Matias method is still the best and safest long term in my opinion.
Hi Wen57, I'm sorry to hear
Hi Wen57, I'm sorry to hear you have not been doing as well recently. Would you mind sharing? Thanks x
Bella hang in there!!! I am
Bella hang in there!!! I am in treatment almost 2 years too and I had happen to me 6 months ago - just horrible!!! I also had "sadness; felt like I was going to lose my mind; fear; very emotional; decreased appetite and this Monday it turned into full blown insomnia." I was maniac - laughing and then crying in one breath - it was sooooo scarey. I also eventually found out my magnesium was in the basement too. It truly is a horrible feeling! I took blood test after blood test - something couldn't be right. On top of it all I gained almost 20 lbs. I kept asking Dr. Matia how can I be so sad I have nothing to be sad about, how can I feel so hopeless it doesn't make sense!!! She kept reassuring me that it was dieoff - every organ holds emotions and they are releasing. I did come out of it but it took some time. And now I just have small bouts here and there. I always try and tell myself it's a good thing - more healing - I know it's sooooo hard though!!! I still have horrible dieoff - almost constantly - and I think after almost 2 years how is that possible??? This is a long journey but well worth it!!!
HUGS!
Claire C
This sounds so challenging!!
This sounds so challenging!! I have had flashes of strong depression (especially before my period) REALLY challenging but fleeting. I think it is quite common, as you are getting near the END of treatment to have these things come up. TRUST Dr. M!! She will get you through this. Your body can go days without a lot of sleep. Even if you get a few hours here and there, your body will be ok. Part of the challenge with insomnia is people start worrying they will not be able to function. And the worry makes it worse. The main symptom of insomnia is that people feel sleepy. That is ok!!!!!!You can do this!
If we don't excel at health, the only other option is disease.
It gives me so much comfort &
It gives me so much comfort & hope to see that I'm not the only one dealing with this issue. My real name is Daniela. I can handle my bladder issues since my IC was not severe according to dr M. It takes so much faith, strength and perseverance to overcome this issue. We are all fighters here and each of you has such an amazing story to encourage & inspire people who deal with chronic illness. I really hope that my treatment is coming to an end. This trial has taken a toll on my job too. I never had to take a medical leave before. My manager was kind enough to let me work from home for the next couple of weeks. I thank God for that! It's so easy to feel alone, trapped or to fall in dispar during this treatment. I think dr M said that it takes years to develop such a chronic condition as IC. It will take a long time to undo all that damage, but it is possible.
Sending hugs to all of you!
I am glad your manage is
I am glad your manage is being understanding-I think it sounds like you have a really good attitude and this will pass- you will get through!
Mimi- I like how you put that. So many times- it is the fear that "i just can't do this" that is worse than the actual symptom. I always have to remind myself- 'You can and you will" and try to stay present.
Daniela I hope you can check
Daniela I hope you can check in to say how you are doing?
If we don't excel at health, the only other option is disease.