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My Story - A Long Road.


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Hi everyone :huh: My name is Tara and I am a 35 year old female recently dx w/POTS (although I started seeing doctors 10 years ago for my symptoms). My illness had a sudden onset @ the age of 25 and no one could figure it out. Initially, I found myself in the ER multiple times - given IV lorazepam and sent home. It wasnt until my husband pushed my PCP for answers, that I was referred to GI, endo, cardiologist, EP specialist, ect and given multiple dx's ie; inappropriate sinus tachy, IBS, anxiety, insomnia and many others to start with. I was started on beta blockers, fludrocortisone, xanax and ambien. I took these meds daily for several years and my symptoms improved some. However, I got tired of going to doctors and having them look at me as if I were crazy and had a mental disorder - which I dont, so I stopped all my meds except xanax and ambien and stayed away from MD's. I felt if it were just anxiety then this should be all that I take. I powered through and somehow manage to work full time and survive (depending on how you define that). However, last year I had a hysterectomy (POTS symptoms seemed to worsen w/my cycle) and my symptoms worsened. My husband final said enough - lets switch PCPs and see what happens. I am a oncology nurse who specializes in chemotherapy administration - so after talking w/my patients, I found out which PCP's were on their game and which were not. I transferred care - and 2 months later, I was referred to the University of Washington Autonomic Dept and Dx w/POTS. My tilt table showed resting hr of 90 w/increase to 150 < 1min upon tilt (max hr was 165) -bp stayed normal until the last 16minutes w/slight drop, my QSART showed > 80% small fiber neuropathy suggestive of distal postganglionic involvement. It has been a long journey and I feel beat up !! Since Im in the health care industry, I see both sides of the coin. I see mistakes and misdiagnosis at the expense of patients. I also see wonderful doctors who care about their patient and wellbeing. However, my experience has left me feeling very angry and upset. I dont know how many times I tried to explain that this wasnt anxiety and was dismissed. Anyway - my neurologist encourage me to find a forum to connect w/others so I dont feel so alone and isolated. After my POTS diagnosis last month - I started back on a beta blocker and fludrocortisone. I continue to take xanax, ambien and was recently started on klonopin for sleep (I only take these at night). I continue to have severe abdominal pain - taking advil and tylenol, but at times I'm so doubled over I cant breath. I hate going to the doctors because I feel (even with the POTS dx) that it looks like I am pill popping patient. I see many patient who are prescribed meds for insomnia/anxiety and there is an underline "view" or stigma associated with it by the medical community. I look forward to talking w/all of you. I have read many of the past post and the amount of support and encouragement is incredible. Thanks in advance for your support.

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Hi Tara Lynn,

It's so nice to meet you! I live in Oregon and wasn't aware that U of W had an autonomic dept. I'm glad you were finally able to get a diagnosis. I worked for 7 years as a PACU (recovery room) RN prior to becoming disabled. You can read my profile for more info, if you like. I'm sorry you had to go through a decade of misdiagnosis. I can relate a bit... I went to over a dozen specialists who just labeled me with whatever diagnosis was in their area of expertise. I was blessed to have a PCP who caught on that this was an autonomic issue and continued to send me to specialists until we found my current neuro who got me into Mayo, where I was properly evaluated and diagnosed. Most of us can relate to some of the frustration you've felt while trying to get to the bottom of your debilitating symptoms.

It takes a really compassionate person to work as an oncology nurse. My mom has cancer, and it's been her oncologist's nurses who make her journey a little more bearable. Thank you for working so hard to help others, and I'm glad you are finally getting some help for yourself.

Will you continue to work full-time?

Please keep us posted :huh: .

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Hi Tara Lynn,

My son was also dismissed saying he had anxiety. His psychologist is actually the one who researched his symptoms and got us pointed in the right direction. When my sons symptoms started(they were not over night, but a gradual increase) he mainly had abdominal pain and nausea. His abdominal pain has ceased since starting Doxepin. He still has the nausea, but he is no longer curled in a ball from abdominal pain. The Doxepin also has a sedative in it, so he takes it at bedtime and it helps him sleep.

This forum has been quite helpful to me, I seem to learn something new everyday.

Christy

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Hi Tara Lynn,

My son was also dismissed saying he had anxiety. His psychologist is actually the one who researched his symptoms and got us pointed in the right direction. When my sons symptoms started(they were not over night, but a gradual increase) he mainly had abdominal pain and nausea. His abdominal pain has ceased since starting Doxepin. He still has the nausea, but he is no longer curled in a ball from abdominal pain. The Doxepin also has a sedative in it, so he takes it at bedtime and it helps him sleep.

This forum has been quite helpful to me, I seem to learn something new everyday.

Christy

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Hi Tara,

Welcome to our support line!!!!! You will really enjoy being here. I have learned so much in the short time I've been here. It is so nice to be able to talk to other people who KNOW what you're talking about.

It sounds like you've been through allot. It is so good that you FINALLY got your correct diagnosis. There is allot of trial and error and many years of searching for all of us here. It sounds like you are doing better on your meds and have now found doctors who are helping you.

I too had a complete hysterectomy at age 36. For some reason issues like this go along with POTS. I had endometrosis and a ruptured appendix. My last abdominal surgery was my 8th. I'm hoping for NO MORE. I think hormones play a part in this thing.

Advil and Tylenol can cause ab. pains. You may need to swith over to some natural form (Ginger and Tumeric). IBS is something else we have in common. I'm REALLY, REALLY afraid of tylenol. (Liver issues.) I've found that a muscle relxr. is the best thing for this. I use Bentyl. It's real mild and seems to help with the POTS issues too. The cramps that you get with IBS are greatly relieved with this. Also colon massage, that you can do helps. Sometimes Lemon Zinger Tea, or Chamomile helps me too.

It's been suggested to me to try the Propranal (sp) with the Florinef. The Florinef gave me real bad headaches and elevated my BP too much. Other beta blockers caused my BP to go too low. I felt better without either of them. I've read that Propranal also has some anti-anxiety features. I feel I have the adrenal issues with my POTS and I really think that particular BB would probably be beneficial. What strength do you use of each of these?

Welcome here. We'll enjoy talking to you.

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Welcome Tara Lynn

I am glad that you found this wonderful group. The knowledge and support here is in a word, incredible. Your journey is like many here and I am sorry it took so long for your diagnosis. Having a bad time after surgery is another common event seen often in forum members.

The stomach problems probably shouldn't be treated with tylenol and advil - but you probably know that. Are you sure it helps or is the pain passing after you do something for it? Have you tried simethicone to eliminate a gas component to the pain? Is the pain in the area around your recent surgery - I'm thinking adhesions - or has your OB/GYN already cleared this? I know you don't advice on seeing a gastro guy and I've put off going back for over a year but there it is - it is your body and your decision. Does your PCP know you are taking the OTC for abdominal pain?

I just don't want you to end up sicker and have to see docs in an ED when you have lost control over who you see for your medical care.

We can all relate to your PTSDD - Post Traumatic Stress Disorder from Docs.

Hope today is a good day

noreen

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Thank you so much for the warm welcome.

I love being an oncology nurse - it makes me understand that things could be so much worse. I can not imagine giving up my job - although I have requested to decrease my hours. I currently work 4 10hour days and am hoping to go down to 3 days a week. The fatigue, weakness, dizziness, lightheadedness, decrease in concentration are the worse. However, I have so many patient that are on chemo and push through the side effects which can be horrific. I guess in a way they give my inspiration to keep going :huh:. Cancer patients have taught me so much - I have so much respect and empathy for the journey that they have to go through and it truly puts things in perspective for me.

At my last doctors appt - she did suggest disability - however, mentally I think I'm still in denial about how disabiling this condition is. Being a nurse is the only thing that makes me feel "normal".

As far as the University of Washington Autonomic Dept goes - its relatively new. They developed it w/the assistance of the Mayo Clinic - there is one physician overseeing it (im not sure if its ok to state his name). If your interested - let me know. I was told that it took so long to diagnosis me because there are only a hand full of medical organizations that can test for it.

I cant wait to get to know all of you. I already feel a sense of relief in knowing Im not alone.

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Welcome Tara Lynn

I am glad that you found this wonderful group. The knowledge and support here is in a word, incredible. Your journey is like many here and I am sorry it took so long for your diagnosis. Having a bad time after surgery is another common event seen often in forum members.

The stomach problems probably shouldn't be treated with tylenol and advil - but you probably know that. Are you sure it helps or is the pain passing after you do something for it? Have you tried simethicone to eliminate a gas component to the pain? Is the pain in the area around your recent surgery - I'm thinking adhesions - or has your OB/GYN already cleared this? I know you don't advice on seeing a gastro guy and I've put off going back for over a year but there it is - it is your body and your decision. Does your PCP know you are taking the OTC for abdominal pain?

I just don't want you to end up sicker and have to see docs in an ED when you have lost control over who you see for your medical care.

We can all relate to your PTSDD - Post Traumatic Stress Disorder from Docs.

Hope today is a good day

noreen

Noreen,

I am almost sure that I have adhesions from the hysterectomy - however, I am scared to have another surgey to take care of it. I know I shouldnt take tylenol or advil but I feel like I'm already taking a lot of meds and am worried about starting anything else. What have others done regarding the abdominal pain ??

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Hi Tara,

Welcome to our support line!!!!! You will really enjoy being here. I have learned so much in the short time I've been here. It is so nice to be able to talk to other people who KNOW what you're talking about.

It sounds like you've been through allot. It is so good that you FINALLY got your correct diagnosis. There is allot of trial and error and many years of searching for all of us here. It sounds like you are doing better on your meds and have now found doctors who are helping you.

I too had a complete hysterectomy at age 36. For some reason issues like this go along with POTS. I had endometrosis and a ruptured appendix. My last abdominal surgery was my 8th. I'm hoping for NO MORE. I think hormones play a part in this thing.

Advil and Tylenol can cause ab. pains. You may need to swith over to some natural form (Ginger and Tumeric). IBS is something else we have in common. I'm REALLY, REALLY afraid of tylenol. (Liver issues.) I've found that a muscle relxr. is the best thing for this. I use Bentyl. It's real mild and seems to help with the POTS issues too. The cramps that you get with IBS are greatly relieved with this. Also colon massage, that you can do helps. Sometimes Lemon Zinger Tea, or Chamomile helps me too.

It's been suggested to me to try the Propranal (sp) with the Florinef. The Florinef gave me real bad headaches and elevated my BP too much. Other beta blockers caused my BP to go too low. I felt better without either of them. I've read that Propranal also has some anti-anxiety features. I feel I have the adrenal issues with my POTS and I really think that particular BB would probably be beneficial. What strength do you use of each of these?

Welcome here. We'll enjoy talking to you.

Thanks for your reply,

I currenly take propranolol 20mg daily and fludrocortisone 0.1,

ambien 0.5mg, klonopin 0.25, xanax 0.5mg (only at night, just to sleep)

I hate being on all these meds

I also had endometrosis and adenomyosis - if I would have known that having the hysterectomy would have made my symptoms worse I dont think I would have done it

I also shouldnt take tylenol - during my workup for the POTS in 2001, they did a abd CT and found a focal nodular tumor on my liver, its usually hormone driven. It's beign in nature but can become symptomatic if it grows too large. Right now its 7 x 5 cm - they scan it annually to make sure it doesnt change. The abdominal pain is so severe at times I dont know what else to take. I dont tolerate narcs very well - although I do have vicodin if it gets too severe.

I have had 2 colonoscopy - negative for anything significant. Gastric empting test showed significant delay w/swallowing impairments.

There are so many symptoms that its frustrating - It's hard to believe that so many things can be wrong w/one person - I feel like a freak at times.

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Tara-

I understand where you are coming from - one approach you might try if you want to stay away from drugs is cranial sacral therapy. It won't hurt and might help. My PT is doing it on my neck as the docs fought in the hall last time I was in and are clueless how to proceed. I was able to pick up and read a newspaper in her waiting room last week - haven't been able to do that in a year without aggravating my constant migraine.

As long as no one is doing without I think this is worth a shot -

http://www.iahp.com/WestWindsCST/

I searched for a doctor in Seattle certified in the technique and got this woman. Her profile says she specializes in post surgical issues.

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Tara Lynn

Do you feel you'r pain is related to your IBS or hysterectomy? Did they take your ovaries too? More later, I'll wait on your answers.

I think its both IBS and adhesions or maybe the endometreosis has returned. I still have my ovaries - but am wondering if I shouldnt have had them removed too. From what I understand women w/endometrosis that have a hysterectomy and leave their ovaries have a high chance that it will return because the ovaries are still producing hormones that drive the endometrosis (if there are any "seeds" left behind).

Tara

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Tara Lynn, do you think your stomach pains might be from visceral neuropathy, which might be causing gastroparesis or other motility problems? I used to have sharp abdominal pains that would double me over and put me in bed. Then I saw a GI doc who figured out I had motility problems stemming from my small fiber neuropathy. There are meds you can take for this, but I found that altering my diet was the most helpful (small meals, low fiber foods, no soluble fiber like apples or oats). And someone posted a research article lately where they tested GI motility in POTS patients while upright and while supine. Normal people have increased motility while upright, but the POTS patients' motility actually slowed down while upright. When I'm really feeling ill, I find it beneficial to lie down after meals although that's probably not an option while you're working.

I agree that adhesions might be the issue, but maybe it would be easier to try a low-fiber diet for a little while and see if it helps? Just a thought. ;) Either way, I hope you can resolve this issue soon.

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Welcome Tara Lynn,

gi pain has been one of my most pervasive problems day to day. Sublingual levsin helps me a bit, but it also makes me tired. On a good note, a side effect is increased blood pressure.

As for removal of ovaries, that's a tough choice to balance b/c many of the autonomic specialists tend to comment that patients with POTS can worsen post menopause. My doctors have told me to expect that I will get worse at that point--but we're each different. My issues are from a genetic disorder, so I suppose it may depend on HOW, exactly, you ended up with POTS.

Nina

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Tara Lynn

Do you feel you'r pain is related to your IBS or hysterectomy? Did they take your ovaries too? More later, I'll wait on your answers.

I think its both IBS and adhesions or maybe the endometreosis has returned. I still have my ovaries - but am wondering if I shouldnt have had them removed too. From what I understand women w/endometrosis that have a hysterectomy and leave their ovaries have a high chance that it will return because the ovaries are still producing hormones that drive the endometrosis (if there are any "seeds" left behind).

Tara

Okay, you diagnosised your pain. Yes, you are right. Everyone I've known that didn't have their ovaries removed during their hyst. with endo. Had to have a repeat surgery, usually within 2 years to have them removed. My surgeon said that what causes the worst pain, is the adhesions that pull on the ovaries. You will no mater, what get adhesions with any surgery. When they attach and pull the ovaries, every movement hurts. You could have had the endo reflare also. I didn't go on hormones for 5 months after my surgery, to make sure that they got all of it and to not have a return flare. I nearly lost my mind not having hormones. But, in the end it was worth it. After, I got through that, I don't have pain any more. My IBS got better too. I seldom have issues with my colon any more. I, too have the tumor on my liver. This developed after my hysterectomy. Years later. I don't understand that. Because they did say it was hormone related. I found that the only hormones I can tolerate are compounded natural ones, used transdermally. That way your liver doesn't have to process them so much. Since you still have your ovaries, you will need progesterone cream also. This will also help balance the too high estrogen. It may even get rid of the endometrosis. I wish I had learned about this before my surgery and tried this. But once you have the adhesions on the ovaries, I think about the only thing that will get you out of pain is their removal. There is a book by Johnathan Wright about natural hormone creams. Also there are two books "What your doctor may not tell you about (1) Premenapause ,(2)Menapause. Read both of these. I think the Pre one has more info for helping you understand what's going on. But both are necessary for clarification and understanding of what to do to balance out. I've found Red Clover helps me with the hot flashes and menapause symptoms the best of any thing I've used. I also use Estriol cream to help with vaganial atrophy and to keep my bones stronger. It also helps prevent breast cancer. Since there are 3 types of estrogen. Estriodol is the main one most people take, but in Europe, they only use estriol. If you can get away with that one only, you will be less likely to have any other issues with the endo or cancers etc. Estriodol is the one that is too high in endom. also the one that causes the liver tumor. Estrone is the other estrogen and is found in fat tissue. I have enough fat and don't need any more estrogen from that either. It is also a relatively dangereous estrogen. Since my complete hysterectomy, I hardly have any issues with pain either abdominal or colon. My IBS got so much better too. Hope this is helpful. I remember THAT pain and it is almost unbearable. I had a friend who didn't listen to me when I told her to let them take out everything. It was less than a year and she was back in. It took awhile to get her hormones balanced later, but she too was out of pain. She tried to stay off of everything for a few months too. I'm serious when I say you feel like you'll lose your mind being so young and not having the hormones, but I guarantee you, you don't want the endom. back. IF you decide to do this, make sure your husband knows what a ride you are both in for. The crying jags, hot flashes, mood swings, etc. I thankfully have a very supportive husband. We've been through allot in the last 30 years, but have managed to remain best friends. He's wonderful!!!!!

Good Luck!!! One thing that has kept me moving ahead, is knowing other people have been through exactly what I have and they managed to survive and come through it. If one other person can do it. I can do it, I'm that determined. Hang In There---you're not alone.

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Thanks to everyone for making me feel welcome.

Issie, thanks for your input - you've given me a lot to think about. I think it might be time to revisit the GYN surg again and discuss further options

I really do appreciate all the feedback.

Thanks again,

Tara

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Hello Tara, glad you found us. I am also a RN and have been through the same frustrations as you. I couldn't believe had badly I was treated by the medical community, they always said I had anxiety too and dismissed me. It took about 6 months for me to get a pots dx, but now have had to go through the mystery dx again for the last 4 yrs cause they think there is something else wrong and I too stopped going to docs for a while until I just couldn't take it anymore. You are so lucky to be able to still work, I haven't been able to for the last 4 yrs. After 3 yrs my pots is better, the things that helped most were Lexapro and lifting weights.

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Tara Lynn, welcome! My 22-yr-old son has struggled with Crohn's disease, POTS, and other autonomic dysfunction for years. The doctors "got" the Crohns' disease right away, but--as in your case and so many others--dismissed all of the other symptoms. Ironically, once the POTS and other autonomic problems were finally recognized, the doctors concluded that some of his earlier surgery (removal of part of his intestine when he was 16) might have hurt more than it helped. I.e., the "obstruction" that the gastroenterologists thought they had to remove might really have been autonomic dysfunction. Well, at least we are on the right track.

My son has lots of abdominal pain. His current doctors suggest that there are two primary sources: (1) slowed motility due to his autonomic/POTS problems; and (2) heightened pain sensitivity that is also related to the autonomic/POTS problems. The key is that the same "small fiber" nerves govern both autonomic function (like stomach motility and heart rate) and pain sensation. If a patient has small-fiber neuropathy. then both motility and heightened pain sensation may be a problem in the GI tract. In particular, the heightened pain can occur with adhesions or other surgical procedures. A patient with small-fiber neuropathy, in other words, may find adhesions more painful than other patients do because, in addition to any inherent pain, the nervous system itself is over-firing.

As you've probably already seen, med response is very varied among POTS patients. The best relief my son has gotten on the motility issue has come from mestinon (in fairly small doses). For direct pain relief, he needs oxycodone, and takes that on a regular basis--without that, he simply wouldn't be able to eat because the pain is so severe. He has also been helped by eating small amounts and a low-fiber diet. His motility is so slow that if he ever ate a piece of brocoli, I suspect it would get stuck!

It's great you've been diagnosed and have found a supportive doctor. The folks on this forum are super--I'm a relative newcomer and have found lots of help and support here. Cheers, Debby

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Tara Lynn, welcome! My 22-yr-old son has struggled with Crohn's disease, POTS, and other autonomic dysfunction for years. The doctors "got" the Crohns' disease right away, but--as in your case and so many others--dismissed all of the other symptoms. Ironically, once the POTS and other autonomic problems were finally recognized, the doctors concluded that some of his earlier surgery (removal of part of his intestine when he was 16) might have hurt more than it helped. I.e., the "obstruction" that the gastroenterologists thought they had to remove might really have been autonomic dysfunction. Well, at least we are on the right track.

My son has lots of abdominal pain. His current doctors suggest that there are two primary sources: (1) slowed motility due to his autonomic/POTS problems; and (2) heightened pain sensitivity that is also related to the autonomic/POTS problems. The key is that the same "small fiber" nerves govern both autonomic function (like stomach motility and heart rate) and pain sensation. If a patient has small-fiber neuropathy. then both motility and heightened pain sensation may be a problem in the GI tract. In particular, the heightened pain can occur with adhesions or other surgical procedures. A patient with small-fiber neuropathy, in other words, may find adhesions more painful than other patients do because, in addition to any inherent pain, the nervous system itself is over-firing.

As you've probably already seen, med response is very varied among POTS patients. The best relief my son has gotten on the motility issue has come from mestinon (in fairly small doses). For direct pain relief, he needs oxycodone, and takes that on a regular basis--without that, he simply wouldn't be able to eat because the pain is so severe. He has also been helped by eating small amounts and a low-fiber diet. His motility is so slow that if he ever ate a piece of brocoli, I suspect it would get stuck!

It's great you've been diagnosed and have found a supportive doctor. The folks on this forum are super--I'm a relative newcomer and have found lots of help and support here. Cheers, Debby

I can't remember if I mentioned this to you or not. I have a friend who has Crohns and has found allot of relief with coconut oil and colostrum. Hardly has any issues any more. He also had some of this intestines removed and did the steriods. Now the two things are all he needs, other than watching his diet. Worth a try and not too expensive.

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