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writing in behalf of my daughter


Nicole's Mom
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Hi. I am writing in behalf of my daughter Nicole who is presently too ill to sit up at the computer. We are new to your forum. I discovered your website about 3 months ago and was astounded to realize that there are so many of you who actually have POTS. We thought we were all alone in dealing with this. Your website is unbelievably well-organized and the support is amazing. I have been passing useful peices of information to my daughter from your posts.

I am hoping that some of you can try to answer a few questions and send support to my daughter who is struggling terribly right now in a major relaspe. She was officially diagnosed with POTS in 1998 by a dysautonomia specialist on the East Coast.

I will give you the short-short version of her story. I?ll make it as short as possible -because the long version would take weeks to write and to read.

Nicole is 28 and became ill in 1996 at the age of 20. Nicole was home on a visit to Rhode Island from California. All of a sudden one day she was overcome with all sorts of problems. We brought her to the ER and they admitted her. Her heart rate was way up. Her blood pressure would drop upon standing - she felt faint, nauseous, achy, and she had strange sensations running through her body. After 3 days of running a handful tests on her, the admitting doc (internal medine) sent her home calling her a psychiatric case.

Shortly thereafter we brought back to the ER and her standing heartrate was 185. Her blood pressure was dropping to basement level. This time a different doc admitted her and for 2 weeks they brought in all sorts of specialist. Basically they scratched their heads and eventually sent her home stating that whatever ?this? was it would go away.

We brought Nicole to many, many docs after this. It became our new lifestyle going to docs and Nicole was unable to do anything but lay down and feel very uncomfortable. Finally because she was experiencing such anxiety we brought her to a psychiatrist - a brilliant, brilliant, compassionate man who could think way outside the box and was good at connecting dots. He was shocked that nobody had tried Nicole on Florinef or any drug for that matter. He didn?t even address her anxiety. He put her right on the Florinef. She was able to tolerate it and 1 pill got her upright and mobile and walking. Her anxiety and depression lifted. She wanted to resume her life. However even though she was upright and mobile she was only around 75% of her pre-illness self. Life from there-on for her would become one long struggle, to say the least.

Since she got on that one Florinef in 1996 her life has been a series of relapses and remissions. The 1 Florinef stopped working. If she climbed up on more Florinef then more would work. With each relapse, however, she needed more and more Florinef. Eventually she was on four Florinef. But now that doesn?t work for the hypovolemia and any more Florinef would spike her blood pressure too high.

Meanwhile the brilliant, compassionate psychiatrist who initially put her on the Florinef and was following her case moved far away. Then another doctor who had entered the picture and was also brilliant and compassionate who understood dysautonomia and hypovolemia and all the symtomatic dramatics that come with this condition also moved away this past year. Now we have one local doctor who seems willing to be cooperate but he is not as knowledgeable about this condition. He is Dr. R.

The situation is that in May, Nicole had a severe relapse - one of the worst we?ve seen and she has been climbing out of it little by little. And I mean VERY little by little. About 2 weeks ago she was maybe 35-40% along toward her remission baseline and we took her to a brand new doc (Dr. C) about 1 hour from home. This doc is smart and compassionate and is testing her for all sorts of things like pathogens and he is wondering why her histamine levels are so high- testing for that. He?s even testing for mercury (which was high in another test) and for lead. Anyway this trip to this wonderful, smart doctor turned out to be exerting beyond what we could have ever imagined. Maybe because he had her standing for bp and hr for a while and Nicole had to tell her 8 year story in one hour and they talked fast back and forth but Nicole came out of there feeling extremely exhausted while at the same time extremely wired (adrenaline on high). This exertion put her into a worse relapse- like unbelievable. She was crashing before our eyes.

On one level Nicole and we-( her mother and father) cannot believe how deeply awry everything has become- yet on another level we can. In this relapse within a relapse Nicole is losing weight from the nausea and lack of appetite. Her standing hr is 150. She is wired. Fatigued. Twitchy. Anxious. Depressed. Mobility is horrible. And brain-fogged to practically a stupor. And much more.

Meanwhile the local doc I mentioned above - Dr. R. had been away. Yesterday my husband called him to try and get our Nicole on IV saline to see if it would help. Dr. R. was cooperative and telephone the newest doctor - Dr. C -to learn more about this type of condition -dysautonomia and to see about all these tests he wants to run. We were relieved that Dr. R. called us back and was willing to put Nicole on 2 liters of saline. She received the saline and the fluids brought her symptom relief. Even though saline usually raises blood pressure Nicole?s supine blood pressure dropped from 140/90 to 120/70 (IV nurse thought high blood pressure was Nicole?s body compensating for dehydration). Nicole?s standing hr was 116 instead of 150. She could sit up. She could stand more easily. The nausea left. Her appetite returned. She could eat. The achiness subsided. Nicole said that it felt like her body had a much needed drink of water. (She drinks a lot of water normally but it doesn?t stick).

But by late last night her head was becoming heavy again and she was beginning to feel symptomatic. And by this AM she feels really sick again- same symptoms. Presently we are in the process of setting up saline for a week- two liters per day - if for any reason to give her body a break albeit temporary each day from being so sick and from her body working so hard. It?s like her body is in this crisis mode. Maybe a week of this IV saline will help stabilize her. And if at the very least it makes her nausea disappear and improves her appetite even if for several hours a day at least she can eat and get some nutrional needs met.

So one question ( of many- I?ll ask the others another time) I have for all of you- is about this very treatment. Have any of you had experience with IV saline? What is your opinion of it? I will let you know how this works for her over the next week.

Also I have a question about salt. You often seem to talk about salt. How much salt do most of you take in? I read in the ?What Helps? section that 10-15 gms is recommended. We figured out that one teaspoon of salt in a glass of water is around 2 gms. And chicken broth is 570 mg. Right now Nicole takes about 3 gms of salt. A doctor once told her that too much salt can throw your body into an imbalance and make you lose fluids. Have any of you been advised of this too much salt thing? And what is too much salt?

Nicole is very brave and can roll with the punches more than anybody I know - but this relapse is really bad and she gets worried from time to time about climbing out of it. So joining this forum seems very right to get questions answered and to get and give support. Thank you so much. And if you can answer my questions we'd be very grateful.

Beverly

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Wow. It sounds like in spite of it all you have had better luck with doctors than most of us have.

Have you switched to Celtic Sea Salt in place of regular table salt? It is minimally processed and therefore retains its natural composition of minerals. Table salt is processed and stripped of everything, then iodine is added back in. Basically, it is junk. The Celtic Sea Salt is certainly more expensive (I believe I paid around $13/pound plus shipping) but well worth it.

Another idea is to look into adding cell salts to her water. I did this through the Metabolic Typing Program (which I believe your daughter would greatly benefit from). I was running to the bathroom about every 45-60 minutes until this was added. It helps the body to retain the water and use it more efficiently in the body. And it helps to balance the chemistry in the body.

Best wishes. I know you'll get much information here and read many personal experiences of what did and did not work for people.

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Has your daughter tried any other medications besides Florinef?

The saline treatment is beneficial for many POTS patients. I know that when I was very sick with POTS, everytime I got an IV I felt tons better--and I experienced what Nicole did also--a drop in both blood pressure and heart rate.

I am sorry she has had such a difficult time, with so many bad relapses. I hope we can collectively help in some way to make things easier and improve.

Take care,

Katherine

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Welcome, welcome, welcome! I'm so glad you found us. Your daughter has gone through some things that sound nearly identical to my own experiences with POTS, so I was very intrigued by your story. She sounds like a very brave soul to be as ill as she is and still searching for hope. Sometimes that is the very best way to live- because I truly believe that someday they will find more answers for us. I am 22 years old and have had this since I was 19, and it also came out of nowhere (or so it seemed). I have regained about 75% of my original capacity over the past 3 years, thanks to Florinef and Pro-Amatine (and a beta blocker that used to work well for my heart rate prior to the birth of my son- things changed afterwards). But I am still unable to work full time or function completely "normally"- it's been a long process with many emotional & physical ups and downs, but I feel that progress is being made. I truly hope the Nicole can one day regain her strength so that she can get out there and enjoy her life a bit more. I hope she is finding things to do each day that make her feel good, though- emotionally and physically. I don't know much about the IV, but I know a lot of others here have experienced some releif this way.

I also wanted to comment that it's wonderful to have such a great doctor that you feel comfortable with. I hope that theywill plug along with various treatments until they find a regimen that provides her with some releif. As the previous post mentioned, I was also wondering what other medications she has tried. Many people with dysautonomia are hypersensitive to drugs, so it can be tricky finding one that works- and sometimes they do stop working, as in her case with the Florinef. It can be beneficial to take a "break" and resume the medication at some point as well- this frequently happens with midodrine (Pro-Amatine) but at least some releif can be had intermittently. In between during the breaks (or in combination with the meds), the herb Licorice Root can be helpful, as it works in a similar way by expanding blood volume and helping with sodium/water retention. I take it on and off during my flare-ups, i.e. after my period when my iron and blood volume are low.

Anyhow I hope to see you here often charting her progress. It can be a long road, but looking forward to the days when we feel well is what keeps us going. It's wonderful that she has parents who care so much, and I wish your family the best in finding the treatment that works for you :)

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Beverly,

I am sorry to hear that your daughter has undergone so much over the past several years. She sounds very brave and I hope she starts to feel better again soon. I can certainly empathize. I've had IVs a few times in the hospital and the ER and they instantaneously helped alleviate my symptoms. With respect to your question about salt, you are right, a couple of drs have told me to take 10-15 g of salt a day. My POTS is probably mild compared to most of the people on this board (so far, knock on wood), and I take about 8-10g/day. I have 2 cans of Campbell's chicken noodle soup (yuck!), which gives me about 5g/day and the rest is from food. (Some people take salt pills, but I can't seem to keep them down). I hate having so much salt and it has contributed to my gaining nearly 20 lbs. But I feel noticeably worse without the salt. I also understand that florinef is most effective in conjunction with a high salt intake. You may want to consider talking to your Dr. about increasing your daughter's salt when she is feeling well enough to eat. Also has your daughter tried a beta blocker? I know it doesn't work for some people, but just thought I'd bring it up as a suggestion since your daughter seems to have rapid heartbeats and sometimes high blood pressure. Good luck and keep us posted.

-Rita

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beverly, first welcome to the site! and to nicole also! i personally have a type of oi that involves not being able to use salt or florinef as i have such severe hypertension. but the majority of people on this site are in nicoles boat. so i am just writing to say that you will get lots of support from them. and lots of ideas. have they tried nicole on a small dose beta blocker? that seems to be very helpful for some people in evening out the pulse and bp. you may find she is intolerant to many drugs, but there are so many out there, hopefully she can find one that helps. i am so glad you found such good doctors. so many are still dealing with doctors that just don't care or don't want to bother with complex people. hang in there and keep us posted. morgan

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Nicole and Nicole's mom - welcome to this forum.

I haven't read what everyone else has recommended so I apologize for repeating anything. But I can tell you that I have had a lot of Nicole's problems, relapses and hellacious dips.

Has Nicole had a tilt table? What is her hemoglobin and hematocrit? Have they done an iron panel which includes iron binding, ferritin and saturation level?

Have they put her on a beta-blocker yet?

You do need to be careful with salt, especially if her blood pressure is already high. Increasing someone?s blood pressure increases his or her chances to have a stroke.

OK, sorry for the questions. I have a standing order for IV saline and it has rescued me a few times.

I was very anemic and hypovolemic a year ago and there were days that I couldn?t stand, would have to crawl to the bathroom and call someone to help me take care of my children.

I traveled from Oregon to Toledo, Ohio to see Dr. Grubb and his treatment plans gave me back some quality of life. At first he started me on some different medications to help with the symptoms but I am so sensitive medication I couldn?t take any of them. I had an allergic reaction to Midodrine, which has been helpful to many people.

The next plan was to start me on Erythropoetin injections. They didn?t take for 3 months until I saw Dr. Grubb again and he wondered why in the heck they didn?t give me the IV Iron that is needed to boost the Erythropoietin. After they started me on weekly IV Iron, the Epogen took off and after a month I felt better than I had in 2 years. I?ve been on the Epogen injections for nearly a year now and the IV Iron for at 8 months and I have some afternoons that I actually feel cured, but they I over do and relapse (stupid me.)

Any way, my menstrual cycle is the worst and I can?t begin to drink enough fluids to keep up with the blood loss, so that?s when I usually need to use my standing order for IV saline. (I?m grateful for this boost from my doctor, it usually saves me at least a week of being in bed.)

You should check out the following web links and try to download this great book from the NDRF.

http://www.ndrf.org/

The book is here http://www.ndrf.org/Reference.htm

http://home.att.net/~potsweb/POTS.html

and then reading thoroughly through Pots Place on the left hand column really helps

http://www.potsplace.com/

If you have any questions please feel free to email me or post.

Steph

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Sorry, adding onto my post above.

IV Saline doesn?t do it alone; it?s just a quick fix!

I?m going to share my medication list and hope that I don?t forget any. I would like to add how much I hate taking pills. When I was 19 years old and diagnosed with thyroid cancer they told me that I would have to have half of my thyroid removed (lobe-ectomy) and then keep it suppressed for the duration of my life. It took the doctor?s over a year to talk me into taking one pill a day. I never thought that I would have to subject myself to all of these, but I rely on this cocktail of pills to survive and function everyday.

Medications ?

Neurontin for (joint & muscle pain) this has been one of the best drugs for me. Neurontin helps block the over activity of neuro-transmitters.

Zoloft (SSRI) minimal dose 12.5 mg

Pepcid for my GERD problem

Zofran (for the severe nausea that I experience)

Erythropoietin injections

IV Iron

Iron ? oral

Synthroid (for my thyroid problem)

Betaxolol is my Beta-blocker

Florinef

PRN, I take

Quinine for severe leg cramps

Hydroxyzine for the severe itching that I sometimes experience

Imitrex ? Migraine medication

I?ve been prescribed Mestinon and Bupropion but haven?t had the courage to try either yet.

I think another turning point for me in this illness was when I added my own concoction of vitamins this past summer (which I absolutely hate taking but will continue to do so because it makes such a huge difference in how I feel everyday) I can?t take the vitamins everyday because they upset my stomach and make me itch. But about every 3 days I take Vitamin E, Calcium, Co-Enzymes, Vitamin C, and Vitamin B12. This is something I did on my own and was not prescribed to me but has given me extra energy and cognitive abilities back.

Since Dysautonomia is a multi-system problem it usually takes a combination of medical specialists to deal with all of the symptoms. I recommend checking the website at Pots Place and the NDRF to find a good doctor in your area to get you started.

Steph

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Hi Beverly (and Nicole)!

Welcome to the forum!

Regarding saline...some people do go on long term regimens of saline and give themselves IV's at home on a regular basis. I've had people tell me this really helps them, and there was a study some time ago that found saline to be the most beneficial treatment of the several treatments studied at the time. However, some physicians feel the benefits of IVs do not outweigh the risk.

I think this sentence from our "What Helps" page explains why we might be able to tolerate (and need) more salt than the average person: Normal subjects reduce urinary sodium excretion on assumption of upright posture, but patients with orthostatic intolerance do so ineffectively (Vanderbilt University Autonomic Dysfunction Center, 1999). (See specific page for references)

Is there any way you might be able to get Nicole to a doctor who specializes in treating dysautonomia? We have a list of physicians on our website. Getting on the right medication can do wonders...however finding the right medication is often trial and error, and this is something a specialist will be able to help you with.

If you have more questions, ask away! That's what we're here for. :)

Michelle

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To all of you who have answered my post I sincerely thank you. I am overwhelmed with your lengthy and thoughtful responses. I appreciate the websites and the lists of meds (thank you briarrose) and your stories and how many of you have improved. Tomorrow I will read it all to Nicole. This will give her more hope.

To respond to some of your questions and comments, Nicole has been officially diagnosed with POTS by a neurologist whose focus is mostly dysautonomia. She did have the tilt table test and it was "positive".

So far Nicole has never tried any POTS drug other than Florinef. She is very sensitive to drugs and has been afraid because of her tendency to relapse to try other drugs. When I am not so tired I will tell you what happened to her while she lived in California- the extent to which she was reacting to her environment-and everything else and how sick she got and how we couldn't get her home and how we had to fly her home by air ambulance as the fuel smell inside the commercial jet sent her to the ER and more. Yet having said that about reactions and sensitivities, she is not totally opposed to trying something else- starting tiny and titrating up. She is so sick of being so sick and sick of being bedridden. She will have to get sturdier from this relapse within a relapse- just in case there are adverse effects. But now she is determined to try something new.

Yes- we are learning that the IV is a quick fix and it doesn't last. But at least during this week each day Nicole might at least have a respite from some of the symptoms. I don't know what will be next. The doctor who is local that is just getting involved admittedly doesn't know a whole lot about POTS and we aren't exactly sure how deeply he wants to get involved or how educated he wants to become. The other doctor who is doing all the testing is only going to treat Nicole if something shows up on his battery of tests. None of the tests are geared to look for POTS triggers. But lots of other things. So in a way we are lucky to have someone to look for pathogens and other things but I think if we had a Dr. Grubb around here I'd feel a whole lot better. He seems amazing. I am so impressed how so many of you seem to make that trip to see him. Presently Nicole could never endure the exertion of that trip but maybe when she gets stronger one of these days she could go. Meanwhile we can follow what you learn from him we can pass it on to the local doctor who ordered the IV and hopefully he will remain interested.

Nicole is not anemic just very, very hypovolemic. She does take Zoloft. She also takes

Clonepin (spelling??) to help reduce the adrenaline feeling- it helps somewhat. And she takes an enormous amount of Potassium because of the Florinef. During remissions she can reduce the Florinef to 1 pill. Still who knows if it even works at all. If it doesn't get her upright on 4 pills does 1 even work- we wonder i.e. is the remission all on it's own.

I'm sorry that so many of you have had hard times with doctors. I have read about your incidents from your more recent posts and from researching past post. We too have had our share of horror events with doctors. Prior to finding the doc (psychiatrist) who put her on Florinef we had some horrible situations. And after that too. It's bad enough to be so sick without having callousness or attitude or docs being threatened if you're educated or being deemed a psyche case a few times over by different docs. We can really, really empathize with those of you who have been treated so poorly.

Again, thank you.

Beverly

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Dear Nicole and Beverly, As most everyone else said, welcome.I am sorry anyone has to go through this, especially the younger ones. Just a few quick comments. Salt- I take about 5-6 gms a day, my favorite source is beef broth. I also use sea salt over table salt, though for differnet reasons(iodine allergy)

Other Meds- I would also reconmend a low dose beta-blaocker. Loss of appetite and nausea, that one you might have to find what works for you. IV's are ok, with me NO WAY(every time I need it or give blood, they turn me into a human pincushion), I try to suck on ice chips. How much does she drink? I average about a gallon a day.Yes, that's a lot. I cannot tolerate florinef.

I hope you get the help you need to get her and yoursleves back on your feet.

Blackwolf

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Regarding saline...some people do go on long term regimens of saline and give themselves IV's at home on a regular basis. I've had people tell me this really helps them, and there was a study some time ago that found saline to be the most beneficial treatment of the several treatments studied at the time. However, some physicians feel the benefits of IVs do not outweigh the risk.

HI. I was just wondering what do they consider the risks of this treatment?

(I know this thread was originally for Nichole so I apologise for butting in. I hope you get more help for your daughter, and she is very lucky to have you to help her).

Sue

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