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Hey all,
Dont know if you guys remember me, it seems like its been so long. I fell ill with IC when I was about 7 months pregnant and am now taking care of my beautiful daughter who is 3 months old. It has been ROUGH. There is so much going on with me I will try to just give the cliffnotes but I would really love some advice.
First off, my bladder pain has improved significantly since the pregnancy. I had a c section and the healing from that was excruciating on my bladder but I have slowly improved and it seems to be more noticeable in the mornings but doesnt affect me too much. But since the pregnancy my body has gone through a beating. I have now been to a gazillion doctors.. Neurologists, cardiologists, nurse practioners, emergency room Drs., etc.. You guys my ANXIETY is off the charts bad and I cant get a grip on it. I had a good week where I felt almost normal, but I have so much going on that even the littlest thing sets off panic and fear like I have never experienced. I am not currently on Dr. B's protocol and here is why, its SO stupid...
I started it after a week of being home with the baby and was doing so good for about a week. Then she added in Siberian Ginseng to my protocol and I suffered a MASSIVE panic attack. I actually thought I was having a stroke. I could tell instantly that it was the Siberian that set it off. I could literally feel adrenaline whooshing through my body and then I got an intense headache which induced fear the my spinal headaches that I got from the c section were not going to go away and I would be stuck in this hell forever. Totally irrational thinking and i recognize it but my subconcious will not let it go. Anyways, I think that threw me into the worst panic attack I've ever had in my life.. then following that I was in hell for a good 3 weeks, I almost considered taking anti-depressents but I just couldnt get myself to do it. Needless to say Dr B stopped me on everything because my panic and anxiety was so intense.
I want to re try the protocol again but I cant help but feel fear going into because of what happened to me previously. And if any of you with anxiety know.. going into something and fearing it before hand will not give you good results. I still suffer with anxiety, nervousness and fear but it isnt quite as intense as it was in the beginning. Oh and to top it all off I might have a small hole in my heart.. same thing my sister had that gave her mini strokes and she had to have it closed surgically. Just another thing to fear. Even though it is common to have a hole in your heart and most people die at an old age not even realizing it. Mine was just caught because of all of the medical visits and trying to figure out my numbness, tingling, dizziness, headaches, and other CRAP that I've been having. My body feels so sick, everyone just wants to throw anti-depressents at me and I have to tell you I'm almost tempted to try them.. almost.
Have any of you ever had a very bad reaction to an herb Dr B has given? How did you get your confidence back? I am so scared to try anything. And I have had an appt with Dr B and she said I need to feel comfortable with the treatment because going into with so much fear will not be good. But I dont know how I can get comfortable again.. I feel so hopeless and lost.
If you made it all the way to the end of this.. a sincere thank you goes your way. Seriously. I dont know who else to reach out to at this point. I want to get help from Dr B but feel trapped.
Hi Lindsey! I was taking a
Hi Lindsey! I was taking a walk the other day and was wondering how you were doing- welcome back! Sorry to hear things have been so crazy for you. I hope you're getting some time to enjoy your baby and relax amidst all the ups and downs.
I don't struggle with anxiety the way some people here do, but I know what it's like and can imagine that associating a very anxious feeling with Matia's protocol would be very stressful. I think you'll know when you're ready to try again with the protocol and to not push yourself to try and do something you're not ready for. Maybe you could try any number of relaxation techniques to help you settle yourself for awhile and once you're feeling a bit more even, you could try again.
Dear Lindsey
I do remember you - I've wondered how you were doing - I'm so sorry that things are rough. It's got to be really hard - feeling the way that you do and trying to enjoy being a new mom.
While I haven't had a drastic reaction to an herb - I have had horrendous reactions to some conventional western meds. One antibiotic filled my lungs with fluid, compazine made my body feel like things were crawling in and out of it - the list does go on.
It sucks that we're all sick. I think that by the time we get to Dr. B - it's not our first choice - it's the one that we seem to be left with. All those easy fixes just aren't there. Maybe the terror of what we have, combined with western medicine failing us, is really hard to grasp - especially if you go in circles looking for another way out.
Somewhere inside of you is the inner voice that led you here - if you listen hard enough - it'll let you know if you're where you have to be.
I've had breast cancer three times - recently very very early stages of melanoma - next week I check into intensive behavioral therapy - stay all day - come home at night. So, I get what it's like when your brain becomes your worst enemy - it is terrifying. While I haven't been to the point of killing myself - I have wanted to go to sleep and not get up.
Today it dawned on me - while I have fought IC and cancer for years - I've also spent years trying to run from the reality that this is a part of who I am - running around in circles, in fear, trying to get control over things that I have no control of - trying to find the life that the luckier person got.
Lindsey, my guess is that you're right where you're supposed to be - trust that leap of faith that brought you here.
Hugs
Hi Lindsey! I had been
Hi Lindsey!
I had been thinking about you, and also,wondering how you were doing. I am sorry to hear you are having a rough time. I have had trouble with tolerating several herbs that Dr B has put me on, not so much with anxiety issues, but with intense pain issues or other odd reactions. I had severe anxiety/panic attacks before starting treatment, but has improved through treatment. Just because you don't tolerate one herb now, dosen't mean you won't later on. You just have to be open with your communication with Dr. B and let her know how you are feeling. She will do her best to make you more comfortable. Wishing you the best, and hope you are feeling better soon!
Anxiety
Siberian ginseng has always made me edgy, jittery, and a bit hyper. I have to take it in small amounts in with other herbs. Perhaps you just took too much? Also, after having a baby, the hormones can change. Maybe that is part of your problem now. Congratulations on your new little one.
Hey Lindsey, I'm so sorry
Hey Lindsey,
I'm so sorry that you are going through this. Having a baby, whether it's your first or your third, means big changes for you and your family. Children are a HUGE blessing, but caring for them requires a lot of energy. I'm sure I'm not saying anything you don't already know, but try to be patient with yourself. Everything will be okay. Just take it one day at a time. Focus on the fact that your bladder is doing better and your anxiety is less overall than it used to be. When I am feeling really anxious and find myself worrying a lot, I remind myself that worrying robs me of the energy I need to take care of myself and love my family. I say the Serenity Prayer. I take things one minute at a time if necessary. And I trust that God is in control, and loves me and wants to restore me to health.
The majority of the time, whatever Dr. B tells me to try works well. Sometimes I have die-off symptoms temporarily, but when that goes away, I feel better than before the change. One time when it didn't work well, it was because it was too much too soon. My body is super sensitive so we are making changes slowly now. I usually start out with a 1/4 of a capsule of something new and go up from there.
There was a partciular herb that made me feel like I wanted to jump out of my skin. Dr. B told me to stop, but it took a few days before the tingling panicky feeling went away. Now I am taking a 1/4 capsule of that same herb and it is helping me a lot.
In terms of your decision whether or not to start back with Dr. B, is there a way you could set up some help for those times when you might have a bad reaction to something? For instance, someone to help with the baby, or seeing a therapist or talking to a trusted friend about your anxiety, someone to come and clean your house, a friend who might help with a meal or two? Or maybe set up strategies ahead of time to deal with the anxiety: walks, meditation, soft music, a good book/movie, a warm bath? I don't know if any of this practical advice helps at all because you are dealing with severe anxiety, but this is all I know to do.
Please let me know what you think. I want to help. I've had panic attacks before (a long time ago) so I know how awful they are. Mine were related to some disfunction in my relationship with my dad. Once I worked through those issues with a therapist, I had no more panic attacks. I still get anxious sometimes, but I usually can nip it in the bud through telling myself the truth. There is actually a great book by that name: Telling Yourself the Truth by William Backus.
Hope this helps!
Lisa
Oh Lyndsay (((((((hug)))))))
Oh Lyndsay (((((((hug))))))) I was wondering so much how you were!!!
I can imagine the fear about taking anything at all right now. I can relate on some levelalthough not as severe. All through this treatment I have wrestled with the fact that it all actually makes my symptoms worse! I know this is a necessary thing and I think now I have finally turned a corner but I never felt that great feeling people talk about where they can look back and see so much improvement. I attribute it to the fact that I wasn't too severe to begin with -so less far to go but also I think I was keeping myself just right above the surface and the herbs etc kind of sparked a bunch of stuff that sort of pushed me under so to speak.
One thing that might help is to remember that everything that happens good or bad is a clue for Dr B to tweak your treatment just for you. She is as much a detective as she is a doctor.
Be kind to yourself.
Praying for you!
Hi Lynday, What is your
Hi Lynday,
What is your little one's name? I am so happy for you and your family!
I have been thinking about you.... I wonder about all of us during the quiet moments;)....and hoping that things were going well. However, I understand some of what you are going through and it makes sense to me that this would be the toughest time for you physically/mentally. My second bout with IC came after my second daughter was around 8 months old. I realize now why my IC came back when it did... think about it.. your body is in this complete alternate state with hormones readjusting, you are not sleeping (at least I wasnt) probably not cooking all the healthy balanced meals because of that sleep depravation and feeling emotionally nuts because of all the crazy love you have for this little darling... and I cried... at everything! lol! To top it all off... .I was breast feeding so that kept me on call every three hours and more hormones adjustments on top of that.... then keep that up for months on end and voila... my IC came back! The good news is that this state is not forever. It took my body about a year to even out the hormones and then another adjustment period after I finished breast feeding. Add that all together and I really don't believe I was back to my normal state until about two years out.
I am not saying that it will take two years for the anxiety to go away. What I am saying is that this is a temporary process and a very sensitive time. physically. I, too, suffered from anxiety and understand the panic attacks. They come on at the strangest times. I remember I had one at a Chinese restaurant with my husband and daughters when Cecilia was about three months old and I thought they were going to have to call the EMS....the only thing I could do to keep my sanity was to hold Cecilia, rock her back and forth and listen/stare at the waterfountain they had at the restaurant. I know it sounds goofy, but in that moments, you do what you have to from going nuts.
I will get back on point;) I doubted treatment on and off for about 7 months, but stuck with it. I am in just a little over a year and I am much better. I have returned back to teaching. My bladder doesn't control my day. I sleep regularly.... etc. I am still working on my problematic heart, but life is good. No one else has been able to guide me correctly besides Matia. But give yourself time. You will know when you are ready to resume treatment. Denise is right... there is a little, inner voice;)
Keep in touch,
Katie
I was so overcome with just
I was so overcome with just plain gratitude when I got on this morning and saw all of your responses. Thank you so much everyone, I read and cherished every word! I still have some hurdles to jump with a possible hole in my heart that may require a closure.. Oh joy. And my hormones are so whacked out my period is 4 days late.. Sheer panic set in that I might be pregnant but I've had like 4 negative pregnancy test so hopefully that's not the case. I think until my period starts I won't be able to truly breathe. Wish me luck in those two areas.
My daughters name is Hadley. She was born june 3rd and weighed 6 pounds 6 ounces, 20 inches long. She came out with strawberry blonde hair and her eyes are still bright blue. Which is weird because my husband and I both have brown eyes. She looks so much like her daddy, She is so beautiful. My milk never came in so I wasn't able to breast feed her :( But I'm trying to not feel like a failure and just tell myself that I need to get myself healthier.
I love you all so much! Thank you for your words and advice. I hope I can start treatment soon.
Hi Lindsey, I haven't been on
Hi Lindsey,
I haven't been on the forums much lately but after reading your post I had to reply..
I started the treatment back in April this year.. the first month I had horrible die-off which included a few days of depression and severe anxiety (not a full blown panic attack) but I managed to get through it. Month 2-4 I was doing amazing, my bladder discomfort went down to a 1/10 and I almost felt like there was nothing wrong with me and thought it was all too good to be true,
In month 5 (August) everything changed.. I started to get severe anxiety and really bad panic attacks, I even ended up in ER a few times thinking I was dying. It was strange because it came on suddenly and nothing in my protocol had changed. I was on the same 4 herbs the last few months..
Dr B tried adding in Vit D and cod liver in high doses but I still felt edgy and my heart was constantly racing, tingling, negative thoughts etc. I then came down with a really bad flu and spent a week in bed where I stopped all herbs... two weeks after that I woke up one morning with severe vertigo, fluid feeling in my ears and muscle weakness. Once again ended up at the doctors who said I had labrynthitis (inner ear inflammation which they think was bought one by viral infection after the flu)
The labrynthitis on it's own is causing me to have tingling and numb hands, crawling sensations in my neck, loss of balance and this is giving me even more anxiety. I've had to stop all herbs completely, and now my bladder is back to sh*t and I even got a UTI a few days ago. I feel like I'm going in a downwards spiral and it's so depressing.
I'm hoping the ear thing clears up in a few weeks, but now I'm also afraid to get back on the herbs full force :(
Have you told Dr B you think the Siberian caused the anxiety? I'm sure she can remove this from your protocol and you can try again.. but as I mentioned earlier I had severe anxiety as part of 'die off' the first few weeks so try and stick through it because it may only last a few days!
Natalie thank you so much for
Natalie thank you so much for responding! Our symptoms sound so similar. I actually read your post a while back when I was too messed up to even respond since I was so anxious.. Our symptoms sound so similar it's crazy. The inner ear inflammation sounds pretty legit to me, especially since it feels like someone's shoving ice picks down my ear canals. I've been to an ENT but he said my ears that used to have fluid look normal now. My dizziness is still lingering though.. So annoying. The last thing I have to get checked out is my heart to make sure I don't require a closure, then I'm gonna start Dr Bs treatment. I did let her know that the Siberian sparked something and she said we could leave it out. I'm sorry your bladder is doing bad again. The good thing is, you know your body is capable of change and healing so once you get back on the herbs you should feel better. Anxiety seriously messes up our bodies and can make the craziest symptoms appear out of nowhere. It's so hard to get a handle on it and its the worst feeling. I'm not starting the treatment until I'm sure that there's no other serious underlying issue otherwise ill go into with fear and Dr B said that's not good. So wait until you feel comfortable mentally to start again. We will get better Natalie :) this is just a little detour.
Hi Lindsey, Is your dizziness
Hi Lindsey,
Is your dizziness more of a spinning sensation or light headed?
I agree - anxiety wreaks havoc on our bodies and is the absolute worst feeling in the world! As I write this, my head is struggling to not spin with severe vertigo, but as soon as I remember what anxiety or a panic attack feels like, the vertigo doesn't seem that bad.. all about perspective I guess?
Thanks for reminding me my body/bladder was starting to heal - once you feel like crap it's hard to remember the good days and you start fearing the worst.. bladder cancer? MS? brain tumour? argh!
I'm really looking forward to the day we are healthy and can look back on these posts and be like 'Wow - I was really messed up back then" and it's all a distant memory :)
Hi Natalie :) it's def not
Hi Natalie :) it's def not light headedness it's sort of hard to explain. It's like when I'm walking it will feel like the elevation in the ground is changing even when it's not, almost like stepping into a dip. I've gotten the full spin only once when I laid on my left side. So I really don't know what my deal is, it's just super annoying and I' haven't been able to drive in a month. Have you tried that modified epley technique (I think that's what it's called) its supposed to be really good for vertigo and only requires hanging your head off a bed and turning in a couple different positions. Look it up and see what you think.
I totally thought I had MS or something else seriously wrong. I'm starting to come to terms with the fact that I'm a bit of a hypochondriac which in itself is linked to OCD and is just plain torment. I've heard of women with IC being diagnosed with this or other mental illnesses. So it's all part of our bodies being ill and unbalanced. The mental symptoms are sometimes just as hard to deal with as the physical.. For me anyways. Fearing the worst is something I do when I'm thrown a curve ball in my symptoms.. Which has been the last 4 months, pretty much since my baby was born. My body is pissed off and completely unbalanced with my hormones trying to find a balance. I'm really trying to work on keeping my mind out of those dark places because I really do think that sometimes I can make my symptoms worse when I obsess over them, then it starts the whole panic cycle all over again.
I've been considering going to a counselor or therapist of some sort. I find that when I talk it out that it helps some. I wonder if this would be helpful for you? Of course ask Matia, I know she doesn't always recommend therapy it just all depends on our situations. Trying to talk this out with someone who doesn't quite understand fear/illness can sometimes backfire on you and make you feel poorly about yourself.. Like "why can't I just be normal like them?".. That's been my experience anyway. And even when they don't say anything that's necesarily negative, you can just see it in their faces.. Like who is this crazy lady!?
Anyways.. I really do feel like Dr Bs treatment is the way to go for us but just remember there's no reason to try and jump into it, she's not going anywhere. You must feel somewhat ready before you start up again. Just keep telling yourself you've done well on the herbs before and the body is constantly evolving and trying to heal so those crappy months you had may never show up again. There will be new things that come up as your body pushes itself out of sickness and if your like me, the obsessive agonizing over symptoms can actually make them worse and put you into a downward spiral. By the way I'm totally referring to myself here, not accusing you of being a crazy lady like me :) I just feel like we might relate to somethings.
I'm sorry your having a spinning episode. You will get better Natalie. We are both young and our bodies are capable of so much more than we realize. I think I've shared this quote in here before but I'll share it again cause it helps me to remember to take it easy. "In order to have magical bodies we must first have a magical mind". I found it in a fortune cookie :)
lots of love to you
Hi LindseyP, I am so happy to
Hi LindseyP,
I am so happy to see you back on the forums. I was wondering how you had been doing.
I think it is really important to work on our mental health as well. I just came back from visiting my Sis, and she is going to send me the name of her Therapist. Luckily this lady does it over the phone so I don't have to drive anywhere. I don't think I will be able to heal fully until I deal with my emotional side of this.
Maybe that is something you can work on now as well to help with all the anxiety.