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Have any of you had shortness of breath as a die off symptom? I have been going through a phase were basic tasks seem more challenging than normal. It is almost as if my arms and legs are heavy. Weird.
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I get
the heaviness of legs and arms a lot. They feel like they have lead in them... hard to move even. It's annoying! I get this with a little bit of shortness of breath, but more dizziness.
yes
me too. : (
Not sure if it is die off as
Not sure if it is die off as I only get about 2 hours sleep a night and have done for months now but I have shortness of breath on an off and have very low energy when I feel like my arms and legs are lead. It would make sense though as if muscles are releasing poisons into the body to be expelled it will take more energy to do the releasing and expelling.
I hope that it is die off for you as it is another sign that the body is doing its job to balance and restore health.
Shortness of breath is one of
Shortness of breath is one of my most common symptoms. I also get heart palpitations. It doesn't slow me down but it is a weird sensation.
I get that feeling of having
I get that feeling of having lead in your arms and leggs....but have never had shortness of breath. I too have trouble with sleep and I feel weak alot. I also feel spacey and my concentration is terrible.
I get shortness of breath
I get shortness of breath often. It went away for a little whole but is back again. I fly airplanes a lot and most notice it when at altitude, but I also notice it when I'm trying to fall asleep at night. Sometimes taking a few really deep breaths helps. But I also find it's like I can't even get enough air into my lungs. Awful feeling.
Hope to be a new patient soon
Hi All,
I am hoping to schedule an appt with Matia very soon. I have been following her work for several years and have tried multiple treatments, but I keep being led back here. Her views on the development of IC make complete sense to me. I have been following the List 1 diet almost completely) since March and definitely can tell that my symptoms are changing. I started by going gluten & dairy free and have eliminated some things I was eating that were not on the list.
I am very anxious to go to LA to see Matia and begin treatment. However, I take care of my mom who has dementia. I am wondering how sick I will get after starting the herbs? That is the only thing that is holding me back. I can have someone take care of my mom for a couple days so that I can go, but I need to be able to function while I'm doing treatment.
I have been dealing with this for several years and feel like it has consumed my life. It has made me become isolative, depressed, anxious, hesitant to make any social plans because I never know how I will feel. I am ready to tackle this and GET BETTER, not just mask the symptoms.
I too notice that I feel short of breath at times, especially when climbing steps or working out. I can also relate to the heaviness in my arms & legs. Sometimes its a huge effort to get up from a chair and go to the bathroom. Does anyone experience alot of "brain fog?" i feel so spaced out sometimes and just out of it.
Well, I just wanted to introduce myself and join in some of the discussions.
Thank you all for being here. It means so much to know that there are people who understand this horrible condition.
Lisa
Hi Lisa
I was afraid of feeling worse at the start of treatment, but guess what, that never happened. I don't think most people feel worse but a lot do get die-off, but that usually doesn't effect the bladder for most. It seems like the big symptoms are flu like feelings, foggy head, stuffy nose, rash and bloating. Not everyone gets all of these and I do not think they would be so bad that you could not function as you normally do. Welcome and I know you will not be dissapointed seeing Matia!
Die off symptoms
Hi Christine, Thanks for your response. I know it's different for everyone, but it helps to have some idea of what to expect. When I quit eating sugar,gluten and dairy I did have dieoff for a few weeks, but it was manageable. My bladder symptoms are almost non-existent since being on the diet, especially during the day. At night, I still have to get up about 5 times. The thing that makes me feel the worst is my sinus issues. I know they're related to the IC because they began around the same time. Any suggestions on where to stay when going to see Matia? Did everyone read her book about her treatment before going? I have not read it but was thinking about ordering it. Thanks, Lisa
Thanks
Thanks Christine for your post! After reading the catalogue of posts on the site I think I am the most concerned about feeling worse after beginning treatment.
I have two little girls I am running around after and so I certainly do not mind a mild worsening before I get better but......I have not taken herbs before and given how sensitive I am (we ICers) are to everything does make me a little nervous.
I am very excited to begin treatment in a few weeks and ready to begin healing!
Also, I wanted to ask.... does every patient begin at list 1 for treatment?
Katie
Most people start List 1
Most people start List 1 before they see Matia. It will help you feel better usually. Then after you meet her she will tell you weather you should stay on list 1 or try some things on list 2. I started on List 1 about 6 weeks before I met with her, it really made a difference on how I felt.
great advice!
If you have not started the diet, please do so. My symptoms (frequency/urgency) improved a great deal just starting the diet. It also makes getting started with Matia much easier. Everyone's reactions to treatment are different. My bladder symptoms just improved. I had other die off issues that were manageable. I was on list one for about 8 months. I had a lot of yeast. I'm on list 4 now but eat several things that would be OK for 5. Feel free to email me if you have any questions that you feel I could help you with. You are on the right path. I'm very joyful for your recovery.
one other thing
I have two children as well. I was nursing my son at the time I went out to see Matia and I took my daughter with me. She is a patient of Matia's as well. We were very lucky to go out and back the same day. We left Austin at 6:30 am, had back to back appts, and returned home that night. It was a long day but so worth it.
Food Question
That is so helpful! I feel as though I am a never ending spring of questions these days:) I put myself on List 1 and have felt sooo much more stable on it. (About 6 weeks) I have tried a few foods from list two (like my morning cup of coffee I can't seem to give up:) and I have not had a flare to cheese, coffee, rice pasta or avocados either. I have not tried all the greens yet.
Ok, so here is the question..... I still am having a hard time with eggs. Sometimes they initiate flares and other times they don't so I went back to avoiding them and I feel much more stable. Is that normal to do well with some foods even though they are on a "higher" list, but still have a problem with a primary food from list 1?
I will add this question to the list I have for Dr. Brizman, but I am wondering what your experience was like in terms of food toleration. Thanks for being open to all these questions:)
Katie
normal with IC?
This is one of the things that makes Matia so incredible. She knows how to treat us even with these crazy symptoms. Right now your body is so fragile that almost anything can set it off. It may not be the eggs. It may be that you eat something that combined with the eggs makes you flare. Do you always buy the same eggs? Some eggs are richer in omega and this can cause you to flare. In the beginning I would eat the same food combos for days until I felt stable and then introduce one new thing. This helped me figure out what I was tolerating.
Yes, make sure you are eating
Yes, make sure you are eating non-omega eggs! They can bother people. You may just be allergic to eggs now, apparently that can happen. Also make sure your coffee isn't flavored, I made that mistake and it made my frequency go way up! Everyone is different with the food but Matia will tell you what you can eat and try. I am already allowed to try things on list 3 and I have only been in treatment since the end of April. I can have cream in my coffee, blueberries and greek yogurt and chedder cheese. At your appt. she will tell you how long she thinks until you start to feel better and how long she thinks it will take for you to be done with treatment.
Eggs
I eat the organic eggs from Walmart. The organic eggs from Whole foods are supposed to be good as well. Do a search on eggs on this site and you will find several brands of eggs that work:o)
These ideas are all so
These ideas are all so helpful!
Regarding Coffee... I have been drinking a flavored coffee! OOps. Guess I will be switching that. Christine-- Do you have a coffee that you drink that has worked well for you? There are a bunch of good organic brands at my grocery store that look yummy, but I have been drinking Godiva Hazelnut....bet I will feel better without that.
I am also interested to hear that Matia is able to give us so much personal information regarding length of treatment etc. after an initial visit. I must admit she sounds too good to be true!
I will make sure I am buying non-omega eggs. I live in Ohio and have a great grocery store here- Heinen's- and their organic brand does not advertise omegas on it. Is the general rule if it doesn't say omegas added then they aren't? I have a whole foods about 30 min away from me that I could travel to get their eggs as well.
Also, which brands of spring water do you drink? I have been buying Deer Park and seem to be doing fine on it. Does anyone else drink Deer Park? I guess it is bottled by Nestle and I read their water report, but to be honest... I don't really know what I am looking for to qualify a water as "good" for me:) Does that make sense?
Also... a little about my IC. I first became symptomatic at the age of 19 in 2001. I had a sever case, but worked with a Holistic MD here in Cleveland and was able to become a symptomatic in about three years. I have had minor symptoms here and there in those years of remission... usually when I was fighting a cold/flu (I am a teacher...lots of those virus going around school:) In that time I had my first daughter in 2003 and my second in 2010. After I had my second daughter.... she was about 7 months old... I became symptomatic again...although not as severe, but I know what's coming if I am not proactive about it now. I decided to become a patient because, well.... she sounds incredible and it is exactly the type of treatment that I think will work... no invasive procedures for me. My major complaints are pressure, frequency and for some really fun days there is urethra pressure/pinching as well. (I did not have that last symptom the first time around)
My main question for you (IC experienced patients:) is after some treatment... how do you feel? ARe there just mostly better days?
How do you tell the difference between "die off" and just the amusement park that is the IC body?
I know I put a lot in here and I am sure it will not be the last questions I ask.
Thank you again for your support,
Katie
I drink any organic coffee
I drink any organic coffee now, as long as it's not flavored, they all seem ok. I drink Deer Park and Crystal Gyser. I just found Deer Park Sparkling water which is nice for a change. I have had no problem with eggs, I've eaten just the regular store brand, cage free and organic. As for after treatment, as far as I can tell, most, feel normal and go about there lives feeling like before they had IC. They just need to be smarter in their choices and not live like before. Cut out sugar, eat lots of veggies, use healthy products on your skin and in your home, stay away from antibiotics and the pill if at all possible. Once you get back in balance you want to stay in balance!
dizziness!
Hey there, tagging on the end of this thread to ask if anyone else has had dizziness/vertigo as a die-off symptom?
I'm about 4 weeks into treatment, been going v well until yesterday morning, when I woke up with crazy room-spinning dizziness. Has continued on and off since, and today I'm having my first flare since starti ng treatment - frequency and soreness/urethral tenderness. Was just wondering if this was to be anticipated?! And whether anyone else had suffered through the dizziness - seems so random I can't quite believe it's connected!
Katie- Our kids are around
Katie- Our kids are around the same ages except I have one in between too!
Sarah- I just got an email from a patient- who is doing great by the way now! 8 months in! She said she had diizziness, vertigo as a die off symptom. SOunds expected to me. hope you feel better soon. vertigo is awful
Deirdre are you feeling
Deirdre are you feeling better? I hope so!
vertigo
I had this early in treatment. I would wake up and feel the room spinning. YUCK! It passed pretty quickly but I still get it every now and then. Not as bad but very annoying.
Went Shopping
Deirdre- You were breast feeding when you began treatment? Did you have a hard time with hormone fluctuations affecting your IC when you weaned? I breastfed my both my girls... but when Cecilia (the younger one) was about 9 months she started eating more table foods and when my flow decreased is when my IC symptoms started to appear again. I have always had a very regular cycle, but I can tell it's hard on my body now ... in a way it hasn't been before. I apologize if this question is too direct--I have been wondering if other ICers have had a similar experience. And yes.. how are you feeling?
Christine- FYI - I went grocery shopping this afternoon and bought an organic coffee called Kicking Horse. I guess it is the #1 coffee in Canada ( or so my grocer told me:) It is pretty darn tasty. Also, I am very glad to hear your bladder has not worsened since you began treatment. I have read some pretty scary sounding "die off" symptoms and it is encouraging to hear of a fairly smooth transitional treatment experience.
Katie
have you read...
Katie, Have you read the part (at the bottom of the diet section) on flaring. It gives all the common things that Matia has found us IC'ers doing that can cause us to flare. Very helpful!
have you read...
Katie, Have you read the part (at the bottom of the diet section) on flaring. It gives all the common things that Matia has found us IC'ers doing that can cause us to flare. Very helpful!
deir and emmarenee
I can't thank you enough! It's freaked me RIGHT out. Have it again this morning and it woke me in the night when I turned over - horrid! Then had the middle of the night fear that in fact I have a brain tumour, and began trying to work out who would look after my son ; - )
emmarenee, you couldn't tell me how long yours lasted for, could you? Mine seems largely ok when I'm upright, just kicks in when I'm lying down, or move the angle of my head too quickly! Just another fun thing to get through, I guess...!
Hope everyone's having good days xx
it's all die off
Are you in treatment with Matia or on her diet? If so, then the vertigo is die off and Matia can help reduce it. Mine was worse turning over or bending down. I still get it occasionally. My husband had it when I started him on probiotics. Matia said that it was normal. As for the brain tumor..we've all been there. I have been a daily regular on this site and have followed the other girls in treatment. We all have these thoughts. I find comfort in the fact that I can always find others who have had the same symptoms at some point in treatment and I only remember one girl who actually had cancer. Try to stay positive and keep your stress down. Stress and hormones are the two things that always make me feel worse. I have two children and I have found that by talking about my health or being stressed really rubs off on them. They don't need the worry. I know my mother was always obsessed with health and taking some new "thing" that was supposed to do "something" for your health. I don't want that for them. Feel free to email me anytime.
dizziness - more info
fellow dizziness sufferers - I've had a look around and this looks like the thing I have:
http://bryanking.net/benign-paroxysmal-positional-vertigo-bppv/
Symptoms are an exact fit - dizziness when lying down/rolling over in bed. Seems the cause is little particulates floating around in the inner ear, which kind of makes sense as we're getting rid of loads of crap in our bodies, I guess. There are exercises suggested, so I'm going to give them a go!
Katie, I gather pregnancy and breastfeeding hormones can have a huge effect. I didn't have IC when I was pregnant, but I did have IBS, and it vanished completely for all the time I was pregnant/feeding! I hear for some lucky people that can be it!
Sarah- I have been having
Sarah- I have been having some issues where I feel like I am about to get an ear infection and then it subsides after a few days. This has happened two or three times and I wondered about this fun new symptom:) being connected to our bodies trying to rebalance itself. Now that I read what you are going through.. I think it must be. How are you feeling today? And as for getting up at night and worrying... believe me you are not alone with that one. How is your IC through all of this? I hope you were able to get some sleep:)
Katie- I am still nursing my
Katie- I am still nursing my daughter. She is 15 months. My IC showed up the week I got my first post partum period at 10 months. that is when I got it with my 2 other kids too. It's around the time they are really eating solid food. I defiintely think there is a hormonal link but I am learning that it is even more complicated. At first, I thought all I needed to do was balance my hormones but now I'm realizing that I need to get to the root of why my hormones weren't balnced too begin with.
Katie ...
... isn't it crazy, having symptoms in our ears?! Have spoken to Matia, who says to hang in there, and to add goldenseal and oil of oregano if it doesn't go away. Have actually had a less bad day today after feeling all flare-y yesterday - still some soreness/irritation, but frequency is back down (and that's the thing that freaks me out the most). How are you feeling?
Has anyone else found that a change in probiotics dose can affect appetite? Mine has just shot through the roof today - most strange!
I have begun to use the
I have begun to use the analogy of my body as an amusement park.. it seems like each day there is a different event... water world:) dizzying tea cups...haha.
Deir- how has Dr. B been treating an underlying hormonal imbalance? I had no problems becoming pregnant (first try each time) but I do have some monthly skin issues, anxiety and mini "hot flashes" that I believe are hormone related. I started my cycle again exactly 30 days after my six week bleeding stopped. Cecilia was about 10 months when my full blown IC came back. I don't know if I am just hormone sensitive or if there is a legitimate imbalance. What did Dr. B say for you?
Sarah-Good luck with the dizziness. I hope the ear imbalances clear up soon. Mine have been 3-4 days in duration probably 3-4 times. I am looking forward to the day when I can look back on all the crazy stuff my body did and just laugh. (hopefully)
Today has gone pretty well symptom wise. I feel bladder "sensitivity", but I am still generally able to go 2-3 hours between feeling really uncomfortable. It's up and down. Each time I think I have found some sort of pattern predictability, it switches up on me again.
Oh.... any suggestions for questions to ask Dr. B at the initial visit? I have a list already, but thought I would ask for those of you who are further along in treatment:)
check the search
There are several well thought out lists that have been written on this subject.
Yep
Checked the search and have some good questions... just wanted to know if there were any you would add.
Great- I hope it wasn't the
Great- I hope it wasn't the power of suggestion but now I've got mild vertigo :(
Oh no! I hope that gets
Oh no! I hope that gets better soon!
I am having a tough flare today.... I have not cheated on my diet so.. I have no idea what has triggered this. I truly feeling better logging on here and chatting with others that are going through the same craziness. It makes me feel so much more hopeful/less alone.
Katie- This is such a roller
Katie- This is such a roller coaster! I've had flares that have no discernible cause. maybe I smelled something weird?
I am definitely feeling pretty dizzy. My husband is so helpful. He just says- "This isn't permanent" That is the most important thing for me to remember htrough this. Those of us who are being treated by Matia can actually say that.
Dear Deir(!)
Sorry the vertigo has struck! Mine seems to have ebbed after a couple of days, to be replaced with general spaced-out-ness, tiredness, head pressure and so on. Larks! Just upped probiotic dose and I think it's affecting me. How are you feeling otherwise?