Aa
haven't been here in a while, here is an update
Hello everyone!
For those that haven't 'met' me, my name is Karin, I've had POTS for 3 years after a virus. I have the Hyperadrenergic type, my HR and BP increase when standing and doing mild activity. I'm taking Clonidine 4X per day, 0.025mg at breakfast and lunch and 0.050mg at supper and bedtime, I'm also taking Celexa 30mg per day.
My symptoms have improved from what they were 3 years ago, this year I've been able to do a bit more but now I have some new symptoms too. I cannot be in large crowds it makes me extremelly ill, and a lot more trouble with digestion.
I was extremelly anemic, my ferritin would not go higher than 6 (live in Canada not sure what the equivalent would be anywhere else) Last August I had an Endometrial Ablation which stopped my very heavy periods and now my ferritin is at 29, so I'm very happy that it is going up.
I'm still unable to exercise but can do a flight of stairs much better than before. I definitely cannot handle warm weather and summer is just around the corner, not looking forward to that!
I am dealing with depression which I think is part of the reason why I was away for so long from this great forum, I have no energy or desire to do anything or communicate with anybody, I feel much better on my own and with not much noise around. I have 3 children, ages 14 and twins who are almost 13 so as you can imagine our house is not very quiet!
I feel better if our house is not so bright so I keep the blinds closed during the day, funny as I fell in love with our house because I loved that it had so many windows and it was so bright, I hope to be able to enjoy that again one day.
Well, I just wanted to update everyone and hope to be back here a bit more often. I am scheduled for a gastroscopy July 13th and hope that will find what is causing this extreme bloatiness.
Hope this finds everyone feeling a tad better!
Karin
For those that haven't 'met' me, my name is Karin, I've had POTS for 3 years after a virus. I have the Hyperadrenergic type, my HR and BP increase when standing and doing mild activity. I'm taking Clonidine 4X per day, 0.025mg at breakfast and lunch and 0.050mg at supper and bedtime, I'm also taking Celexa 30mg per day.
My symptoms have improved from what they were 3 years ago, this year I've been able to do a bit more but now I have some new symptoms too. I cannot be in large crowds it makes me extremelly ill, and a lot more trouble with digestion.
I was extremelly anemic, my ferritin would not go higher than 6 (live in Canada not sure what the equivalent would be anywhere else) Last August I had an Endometrial Ablation which stopped my very heavy periods and now my ferritin is at 29, so I'm very happy that it is going up.
I'm still unable to exercise but can do a flight of stairs much better than before. I definitely cannot handle warm weather and summer is just around the corner, not looking forward to that!
I am dealing with depression which I think is part of the reason why I was away for so long from this great forum, I have no energy or desire to do anything or communicate with anybody, I feel much better on my own and with not much noise around. I have 3 children, ages 14 and twins who are almost 13 so as you can imagine our house is not very quiet!
I feel better if our house is not so bright so I keep the blinds closed during the day, funny as I fell in love with our house because I loved that it had so many windows and it was so bright, I hope to be able to enjoy that again one day.
Well, I just wanted to update everyone and hope to be back here a bit more often. I am scheduled for a gastroscopy July 13th and hope that will find what is causing this extreme bloatiness.
Hope this finds everyone feeling a tad better!
Karin
I got your message and only one : ) I'm off to bed, but I will read it in the morning and respond then. Take care.
I tried to send you a message four times, so if you get four messages.....so sorry. :) I don't know why it still won't let me send it. Hmmmm....
Hello, I sent you a private message, but it wouldn't accept it. There wasn't a code for me to type in. Not sure what is happening to the site. Anyhow, will try to send it later. That is very interesting that you had mold in your house, we did too. I will send the letter again later.
Hope you are having a good day. :)
Tkimber
Hope you are having a good day. :)
Tkimber
Hi tkimber, thank you for your reply. Yes it's been a long haul. You know it is interesting you say that it all started after a fungal spore that caused your pneumonia. In the summer of 2003 my husband had to re-do our bathroom in the cottage as we had not noticed a leak in the bathtub wall and when he removed it was all black mold. He removed that wall but that black dust was all over the bathroom, this was August of 2003, Sept. 2003 I got a cold that went for 2 weeks and I was feeling horrible, my doctor put me on antibiotics but I was never tested for this mold or fungal spores you mentioned caused yours. Right after that is when my POTS developed.
As per the Clonidine, I was started on a very low dosage, 0.025mg once a day, I took that for about 2 weeks, then it was increased to twice a day for 2- 3 weeks, then 3x a day again for 3 - 3 weeks, and I could extend the amount of time depending on how I would feel with the new dossage, I got to the 4x per day, then I was monitored on the 4x/day for a few months, until we noticed that my BP was too high at bedtime, so it got increased to what I'm now, 0.025mg breakfast and lunch and 0.050mg dinner and bedtime, that seems to be my magic dosage.
I too have were my BP drops at times but it is not as often, I usually drink a coffee or a can coke and that seems to raise my blood pressure or if I notice before a dosage then I can skip that dosage too, it is all a juggling act. But at least the increase in BP when standing has gotten much better once I started the Clonidine.
My doctors were really cautios of giving me the anesthetic when I got the ablation done, I was put under a mild sedative instead or right under. I was aware of what was happening, at one point it started to wear off so I could feel the pain, I told them and they gave me something else at which point I had an allergy reaction to it, my throat started to close and I broke out in hives, pretty scary but I was ok. I got tested for all that I was given and I reacted to all of it, but not enough to be an 'official' allergy but just a high sensitivity to it. I'm going to get a gastroscopy on July 13th and some of the medicine I got during the ablation will be given to me again, but they are aware of how my body reacts so I'm trusting in God that I will be fine.
If your anemia is that strong and your doctor does not want to do the ablation perhaps even just putting in a Mirena IUD? I didn't want to go for that as it does changes your hormones and I did not want any other changes in my body with everything that I already have. So I opted for the ablation and it has been the best thing I could've asked for.
I was reading about this autonomic storms you were referring too, and it made me curiuos if I have experience some mild form of it? I have had 3 instances when I've been in very crowded areas that I do not feel well at all, I start to sweat so much, I get chills - like one would get before the onset of a fever, a whole body ill feeling, my BP and HR increase, almost like a panic attack but not really, I've had to leave inmediately and come home to lay in bed for hours as my body feels so bad almost like twitching too, I'll have to read more about this. I told my doctor and he was not surprised about it, but he said he was surprised that I haven't fainted on those situations. So my 'homework' is to go out to stores but only for short periods of time and come home before any of these symptoms start to develop, so far so good but I do really avoid being in crowded stores as it was not a good feeling at all.
Hoping you are doing well and thanks again for your message.
Karin
As per the Clonidine, I was started on a very low dosage, 0.025mg once a day, I took that for about 2 weeks, then it was increased to twice a day for 2- 3 weeks, then 3x a day again for 3 - 3 weeks, and I could extend the amount of time depending on how I would feel with the new dossage, I got to the 4x per day, then I was monitored on the 4x/day for a few months, until we noticed that my BP was too high at bedtime, so it got increased to what I'm now, 0.025mg breakfast and lunch and 0.050mg dinner and bedtime, that seems to be my magic dosage.
I too have were my BP drops at times but it is not as often, I usually drink a coffee or a can coke and that seems to raise my blood pressure or if I notice before a dosage then I can skip that dosage too, it is all a juggling act. But at least the increase in BP when standing has gotten much better once I started the Clonidine.
My doctors were really cautios of giving me the anesthetic when I got the ablation done, I was put under a mild sedative instead or right under. I was aware of what was happening, at one point it started to wear off so I could feel the pain, I told them and they gave me something else at which point I had an allergy reaction to it, my throat started to close and I broke out in hives, pretty scary but I was ok. I got tested for all that I was given and I reacted to all of it, but not enough to be an 'official' allergy but just a high sensitivity to it. I'm going to get a gastroscopy on July 13th and some of the medicine I got during the ablation will be given to me again, but they are aware of how my body reacts so I'm trusting in God that I will be fine.
If your anemia is that strong and your doctor does not want to do the ablation perhaps even just putting in a Mirena IUD? I didn't want to go for that as it does changes your hormones and I did not want any other changes in my body with everything that I already have. So I opted for the ablation and it has been the best thing I could've asked for.
I was reading about this autonomic storms you were referring too, and it made me curiuos if I have experience some mild form of it? I have had 3 instances when I've been in very crowded areas that I do not feel well at all, I start to sweat so much, I get chills - like one would get before the onset of a fever, a whole body ill feeling, my BP and HR increase, almost like a panic attack but not really, I've had to leave inmediately and come home to lay in bed for hours as my body feels so bad almost like twitching too, I'll have to read more about this. I told my doctor and he was not surprised about it, but he said he was surprised that I haven't fainted on those situations. So my 'homework' is to go out to stores but only for short periods of time and come home before any of these symptoms start to develop, so far so good but I do really avoid being in crowded stores as it was not a good feeling at all.
Hoping you are doing well and thanks again for your message.
Karin
Oh I had the catherer one done, had it for 24hrs it was not pleasant at all, the Bravo sounds much better! I hope they figure it all out for you.
As per your question, yes all of that was ruled out, the doctor that is treating my POTS is a Nephrologist, Kidney Specialist and an Internist, all of that has come out fine, just like when they were trying to figure out what all I had before getting diagnosed with POTS, every test was normal.
Take care,
As per your question, yes all of that was ruled out, the doctor that is treating my POTS is a Nephrologist, Kidney Specialist and an Internist, all of that has come out fine, just like when they were trying to figure out what all I had before getting diagnosed with POTS, every test was normal.
Take care,
I don't know if my esophagus muscle is working right, but they plan to find out with testing.
So they ruled out things like kidney failure, congestive heart failure,and lymphoedema?
A Bravo measures the ph- it's implanted and works its way out after awhile and there's a box that goes with it. But it's newer technology eliminates the requirement of having a catheter sticking out of your nose the whole time the test is going on.
So they ruled out things like kidney failure, congestive heart failure,and lymphoedema?
A Bravo measures the ph- it's implanted and works its way out after awhile and there's a box that goes with it. But it's newer technology eliminates the requirement of having a catheter sticking out of your nose the whole time the test is going on.
wow, it sounds like you've been through a lot. I just ran across a few of your comments. So sorry for you. You caught my attention because I'm having a lot of the same symptoms you are having. But I don't have POTS. Mine is the opposite and my blood pressure goes up if I stand up. Occassionally I have problems if my headaches get too bad and I get a cold or flu or too much heat and my blood pressure drops so low that I have what they call autonomic storm or seizure. It's scary. Anyhow, the reason I was writing to you was that I see that you take Clonidine. They just prescribed it for me and I'm so afraid to take it. They said they can't force me and they aren't sure what how my body will react to it, since I have developed terrible medication sensitivities. My main issues also started after a bout with a pneumonia from a fungal spore. Anyhow, I'm glad to hear that you are doing a little better, but still sounds like you have quite a time. Am truly truly sorry to hear that. My throat also gets terrible reactions from the gastro paresis, but as long as I keep things moving, I can get by. But yours sounds very severe. I also average on the ferritin scale about a 1 to a 10. The anemia is terrible. I went in for a consultation for the ablation, well after a biopsy I went into the autonomic storm and they had to call the ambulance. The doctor said she would never ever perform surgery on me, unless I was in a due or die situation. So that didn't work out, so I am praying for early menopause. :)
Anyhow, nice to meet and am sending you healthy prayers and wishes.
Tkimber
Anyhow, nice to meet and am sending you healthy prayers and wishes.
Tkimber
Is your esophagus muscle not contracting properly? I don't have an issue with that so that was never brought up to me. I have read that some patients can develop gas bloating syndrome but from what I read it is just after surgery, I was fine for years, all of this just started in the last 8 months or so. Anyway we'll see what the doctor has to say after my gastroscopy. And yes you can not throw up at all after this surgery, all you get is wretching and it is extremelly painful.
As for the swealling they can't figure it out, the specialist just gave it a medical name: idiopathic cyclic edema that basically I have swelling in a pattern and they do not know why, it is a symptom that I have gotten use to so I given up on figuring out why or how to get rid of to tell you the truth.
What is a Bravo? Hope your scope doesn't have to be rescheduled and that all goes well.
Take care!
As for the swealling they can't figure it out, the specialist just gave it a medical name: idiopathic cyclic edema that basically I have swelling in a pattern and they do not know why, it is a symptom that I have gotten use to so I given up on figuring out why or how to get rid of to tell you the truth.
What is a Bravo? Hope your scope doesn't have to be rescheduled and that all goes well.
Take care!
That is the kind of surgery the doctor brought up to me, but said it would be contraindicated if my esophagus muscle didn't move well. I looked on a website that says 6 in 10 have problems with increased gas. So perhaps it is a side effect of the surgery you had that you are experiencing in regards to the bloating? I didn't see them mention about not being able to throw up!
Wow- regarding the swelling- what have they ruled out? Can you wear your wedding ring on a necklace chain? This is what one of my sisters did for a time, if I remember right, when her finger was too swollen to wear it on it.
The scope is scheduled at the moment for June 23rd, but not sure if there will be a re-schedule. They are planning to implant a Bravo.
I hope you will be encouraged in the care here & have that opportunity to try to lift others up!
Wow- regarding the swelling- what have they ruled out? Can you wear your wedding ring on a necklace chain? This is what one of my sisters did for a time, if I remember right, when her finger was too swollen to wear it on it.
The scope is scheduled at the moment for June 23rd, but not sure if there will be a re-schedule. They are planning to implant a Bravo.
I hope you will be encouraged in the care here & have that opportunity to try to lift others up!
Hi there! thanks for your response. We do have central air, we actually have been using if for a few months already, my kids have heaters in their rooms but otherwise I can't cope in the house.
As per the bloating, it is just bloating, it comes and goes, I have gained tons of weight with the Celexa (about 40lbs) but the actual bloating is definitely something going on with my digestive track.
I suffered from GERD for years, after 4 years of that I ended up having a Niessen Fundoplication (NF) in 2003, GERD completely went away, a side effect of this surgery is that one is no longer able to vomit - ever!
In the past 8 months 'something' has triggered my stomach were it just starts to fill with gas and at the beginning I can burp it out but eventually it becomes so much that there is nothing coming out, I have extreme pain, wretching and I'm under a lot of distress so my husband has taken me to the ER 8 times already where I get an NG tube put in and the relief is inmediate as all gas is released. Not sure what this is being caused by so I'm hoping this gastroscopy will tell us something but not sure if POTS is trigering something??
I do get full quickly but that has been there since my NF, not sure if it is really POTS related or a combination of both?
I also have swelling of the hands, ankles and feet, this has a pattern: My hands swell up overnight and the swelling goes down throughout the day. My feet and ankles swell up during the day and the swelling goes down throughout the night. My doctors cannot figure it out, I've learned to live with it but miss so much wearing my wedding rings all the time.
Hope you do get your scope soon.
And yes my plan is to visit here more often, I had great support here but somehow I was not in a good state of mind for a long time to be talking about all of this, I feel a tad better now so I hope I can also help others feeling the same way.
As per the bloating, it is just bloating, it comes and goes, I have gained tons of weight with the Celexa (about 40lbs) but the actual bloating is definitely something going on with my digestive track.
I suffered from GERD for years, after 4 years of that I ended up having a Niessen Fundoplication (NF) in 2003, GERD completely went away, a side effect of this surgery is that one is no longer able to vomit - ever!
In the past 8 months 'something' has triggered my stomach were it just starts to fill with gas and at the beginning I can burp it out but eventually it becomes so much that there is nothing coming out, I have extreme pain, wretching and I'm under a lot of distress so my husband has taken me to the ER 8 times already where I get an NG tube put in and the relief is inmediate as all gas is released. Not sure what this is being caused by so I'm hoping this gastroscopy will tell us something but not sure if POTS is trigering something??
I do get full quickly but that has been there since my NF, not sure if it is really POTS related or a combination of both?
I also have swelling of the hands, ankles and feet, this has a pattern: My hands swell up overnight and the swelling goes down throughout the day. My feet and ankles swell up during the day and the swelling goes down throughout the night. My doctors cannot figure it out, I've learned to live with it but miss so much wearing my wedding rings all the time.
Hope you do get your scope soon.
And yes my plan is to visit here more often, I had great support here but somehow I was not in a good state of mind for a long time to be talking about all of this, I feel a tad better now so I hope I can also help others feeling the same way.
Thanks for popping in and letting us know how you are faring! I hope you will be able to come more often. I'm glad you have seen some improvements. A ferritin of 6 is low here in the U.S. also.
It sounds like you have a really big handful with three teenagers in the house. And with summer around the corner (and a heat wave already where I live), I hope you have central air conditioning that you can utilize big time?
I hope when you say bloatiness, you aren't referring to sudden weight gain, because huge weight gain is what happened to me when I was on Celexa generic. Is this the first time you would be having a gastroscopy? Also, if you feel full quickly in addition to bloating, are they going to be checking for gastroparesis? Lord willing, I will get another scope of my esophagus, stomach and duodenum later this month. My GERD is not doing well.
It sounds like you have a really big handful with three teenagers in the house. And with summer around the corner (and a heat wave already where I live), I hope you have central air conditioning that you can utilize big time?
I hope when you say bloatiness, you aren't referring to sudden weight gain, because huge weight gain is what happened to me when I was on Celexa generic. Is this the first time you would be having a gastroscopy? Also, if you feel full quickly in addition to bloating, are they going to be checking for gastroparesis? Lord willing, I will get another scope of my esophagus, stomach and duodenum later this month. My GERD is not doing well.
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