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Hello, all. I have just recently discovered this board and I can't tell you how great it is to finally know that there are people out there that are in the same boat that I am in. Please forgive me for the length of this post.

My name is April Abbott and I am 26 years old. I began having "problems" when I became pregnant, 6 years ago, and my life has been a roller coaster ever since then.

It started during my fourth month of pregnancy with very random bouts of being lightheaded and feeling flush. It only happened a couple of times before I contacted my ob/gyn and they did some basic bloodwork. I also felt that I might of had some palpitations during these spells, but only for a moment, so they did put me on a portable heart monitor for 24 hours and the results of that were pretty much useless, as were the results of the standard blood and urine tests. I was told that everything was normal from the heart monitor results but I never had any of my "spells" while wearing it. My ob doctor pretty much wasn't sure what direction to go in. She said it could be hormones but that if I wanted to go see a neurologist that she would refer me. The idea of having additional tests scared me and since it had only happened a few times and the baby checked out okay, I declined the referral and went through my pregnancy feeling spaced out and light headed and pretty much overwhelmed. I attributed it to pregnancy hormones and figured it would get better after delivery.

The spells got worse and there were times I couldn't drive or even stand in line at a grocery store without becoming hot and light headed. I would have to stop everything, sit down for a long time and have someone drive me home immediately. I did come close to passing out one time and actually fell on the floor with the sides of my vision becoming dark around the edges. This actually happened at my appointment for an ultrasound but seeing as how all of the doctors and techinicans were complete morons, no one really checked it out thoroughly. But I had never actually lost concsiousness, which was always a huge fear of mine.

About a week before my due date I developed pre-eclampsia. It wasn't actually found until my checkup(thanks to the idiot nurses that I talked to on the phone that insisted nothing was wrong, despite all the classic symptoms) and at that point I was only 2 days away from the official date and they did induce labor.

The labor was pretty much a breeze for me, in terms of length and pain level, but after I delivered my bp actually began to rise. I was so swollen and was put on magnesium sulfate to prevent seizures. I felt terrible and began to grow very weak and scared. The mag sulfate made me feel way worse and I was kept in the hospital a total of 4 days after delivery. No one had sufficient answers as to why I wasn't getting better, but actually feeling worse. It was so depressing because that is where we spent Christmas Eve and Christmas Day. I didn't have the strength to even use a bed pan and had to have a cathiter inserted. I insisted on breast feeding and this made it much harder on me.

The day I was to be released my bp was higher than ever. It was 190/118 after waking up from a nap, and this was while I was still lying down without moving. But I was released and went home a nervous wreck.

Well, here I was with a new born baby to take care of and I couldn't take care of myself. I was put on complete bedrest for about a month and simply followed up with my ob/gyn to have my bp checked. I was told it would go down on its own after deliver after a few weeks. But after every appt. it just seemed to stay really high. This made me nervous and paranoid and I still wasn't getting answers.

After coming home, I simply could not function. I was on bed rest so my husband had to take nearly a month off of work to take care of me and the baby. I stuck with the breastfeeding and that was so difficult, especially since breastfed babies eat once an hour. I wasn't getting any sleep, I was having muscle weakness, shortness of breath and felt light headed all of the time. The bedrest stretched into 2 months since my bp wasn't going down and the symptoms only worsened.

I finally coaxed myself out of bed, despite my symptoms and mentally chastised myself until I was able to function again. I still felt horrible all of the time but my husband had to return to work and I had a baby to raise.

Months passed and there were a few ER visits because of chest pain, trouble breathing and heart racing/palpitations. I was looked at like a crazy person and sent home after hours of waiting all night long in a waiting room with callus nurses. Even on the good days I felt so bad. My bp stayed high, my pulse rate stayed high, I was light headed all of the time and I never left the house. Other symptoms emerged such as muscle weakness/twitching, chills, insomnia, dizziness, frequent urination, palpitations, feeling "wired" and spaced out, unable to focus, sensitivity to light and sound, and many others I can't even remember. These symptoms were dramatically intensified if I became sick or sleep deprived.

My little girl was about 9 months old when I finally saw a cardiologist. I thought that I might have mitral valve prolapse. After an echocardiogram, that was ruled out and he scheduled a tilt test. He tilted me around on the table for several minutes and it didn't cause a reaction. But when they administered the medication to speed my heart rate, it definitely triggered something. If I hadn't been strapped in, I would have collapsed on to the floor. My heart began to race and pound against my chest until it felt like it might burst. I was told that my bp dropped so low that the machine wouldn't record it. That was a terrible experience for me but I was finally told there was a name for my condition. Dysautonomia. I was put on a beta blocker called Lopressor and I tried that for several weeks, to no avail. I actually felt worse on the medication and that was my lowest point. I could not function at all during this period. I practically moved in with a relative during the day and stayed in bed, only sitting up to breast feed. I wasn't even sure if I believed the diagnosis that had been given to me since the medicine made me worse and the doctor never went in to great detail about what dysautonomia was. I was told basically that my autonomic nervous system wasn't functioning properly and that I might get better over time or I might not. At my request, I was referred to an endocrinologist and a neurologist for more tests, both of which were useless and terrible. I felt more confused than ever and my symptoms continued. I finally accepted that I would always feel like this and that the quality of my life would be terrible. I have dealt with symptoms off and on for years.

However, for the last year I have felt fantastic. My condition practically seemed to disappear, only showing its ugly head every once in a while. Of course, I was told by other doctors and nurses that I saw that it was all in my head, or my favorite, "You have post-partum depression." It didn't matter if I was depressed or not, the doctors insisted that is what it was, even if the symptoms did start when I was four months pregnant and did not resemble depression.

But, as I said, this last year has been great. Until recently. All of a sudden, I began having symptoms again, although they don't seem to be as bad. I continue to struggle but I continue to function and on bad days I just stay home. I am on no meds at all right now by choice. I have tried antidepressants, and the beta blocker, but the side effects seem to be worse than my condition at times. And I fear putting anything in my body for such a long period of time, not knowing what the long term effects of these medicines will be. I do also have slight hypothyroidism but have stopped taking my small dose of synthroid(just 50 mcg) and have no symptoms of hypothyroid at all. Of course, I never did have low thyroid symptoms to begin with, it was just determined because of blood work. And I was told it was very mild and didn't absolutely have to be treated with meds at this time.

And now I have found this board. When I read the symptoms for POTS I could not believe what I was reading. Everything fits perfectly into what I have been feeling for years. I saw that a lot of you had pre-eclampsia and I see a lot of phrases and descriptions of this enigmatic disorder being written here that make my jaw drop because these are the things I have been feeling for years and no one else has understood. For example, when I feel really bad and weird on my bad days, I don't even know how to describe it to anyone. For years the only description I could give my husband was "I feel like I have been poisoned." Of course, he gives me weird looks and as hard as he tries, he doesn't understand. He has been supportive but no one can be completely understanding without being in our shoes. But today I read a post by someone that said "I feel like I've been poisoned." I was stunned because that is such an odd thing to say, yet, I have said it for years and I always get weird looks from my family.

Well, I have taken up more than enough space and I am sorry. I just wanted to introduce myself and let you all know of my situation. I am so glad to see there are people out there than can completely understand and support me now.

I hope to get to know you all and I plan on posting again soon with some questions, and maybe even some suggestions for others. At the very least I can offer my understanding and emotional support to all of you as we battle this together.

April

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Hi April, I am so glad you found the forum. I think you will find many here do have a similar story as yours. Unfortunately, it can take a long time to get a diagnosis and even longer to go through the list of meds to see if anything will make you feel better. I had the same problem with beta blockers and only take if absolutely necessary.

I am glad to hear that you enjoyed a period of time when you were feeling "well" again. It is not uncommon to have relapses (for lack of a better term). Some people are lucky to have these only be minor but any type of stress can trigger a setback.

Again, welcome and thanks for letting us get to know your story.

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April,

Welcome! :) This is a great site with a lot of support and knowledge to offer.

First off, You are not crazy or "just depressed" although, it's not uncommon to have some depression from this stuff in part because your hormones can get really messed up and also from the life changes and struggles that chronic illness bring.

One thing I want to say right off is that I would advise you to really look at getting back on the thyroid medication. I have Hashimoto's and it was initially found by a rheumatologist who did some "uncommon, fancy" bloodwork and found my Thyroid Antibodies were over 3,000 (normal was something like 30 or less!!). My TSH at first was normal but my antibodies were so off the chart and I had symptoms (heart rate changes, fatigue, some weight gain, muscle aches) so they started treating me with a low dose. Over time my TSH levels started to show my thyroid failing more and we change my dose. I was one of the "backward" people in that with Hypothyroidism most people tend to have a decrease in heart rate but mine became increased and was much more sporadic. I was also told by the Mayo Clinic that often for people my age (mid 30's) they find people feel better when their TSH level is between a 1 and a 2 (this is the lower end of the normal range). I have been lucky in that I had an endocrinologist who worked with my symptoms and not just the numbers alone. Initially my TSH was 5 but I was having symptoms. Just something to think about and discuss with your physician.

Have you tried increasing your fluid intake and electrolytes? (Gatorade or similar drink).

It's late and I'm wiped out I've got to sign off but I'm sure you'll find lots of great support

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Hi April,

I had to read the name at the end of your post a few times because it sounded exactly like something I wrote when I found this board 15 months ago!! I can't believe how similar your story is to mine. I am 29. My POTS also came on with my pregnancy, although in my case just a few days after I delivered. I also had preeclampsia and a very small baby for gestational age (4 lbs. 8 oz. at 37 weeks). Three days later, I started feeling short of breath on occasion, and from there I went completely downhill, with my heart rate being in the 140s every time I stood up, feeling dizzy and near fainting, having continued BP problems for months following childbirth as well. I also lost A LOT of weight, and then started to lose muscle and developed severe muscle weakness. I can't even tell you how many other odd symptoms I have had since. I also have the twitches you mention, to this day, and a very dry mouth.

I am taking 50 mg Toprol XL. I have been on and off of this, and my docs are planning to cut it back to 25 mg in the next couple months to see if a lower dose improves my energy level. I also take Effexor XR (75 mg) and 0.25 mg clonazepam. I always took the clonazepam even before pregnancy, because I have a history of panic attacks, but stopped it during my pregnancy and postpartum for obvious reasons. It helps me to relax and deal with all that my body is going through.

I have tried Advair and albuterol for the shortness of breath. Neither worked. Yoga and meditation help more than any drug.

Perhaps the most useful things for me have been exercise, cod liver oil daily, a high-quality multivitamin, B-complex and a calcium/mag supplement. I force myself to exercise even when I feel like death. I also feel better when surrounded by friends and family, and I avoid taking on too many responsibilities. I cut my hours at work back to part time and take care of my daughter at home a few days a week. I must also say my daughter is THE reason I have gotten this far. There have been many days where I felt like just going to bed forever, and I would drag myself to her crib and see the amazingly adorable expressions on her face, and that was enough to make me forget how I felt (at least for a moment, anyway!). My husband also has been a great support, especially as time has passed and he how understands how my body operates better.

Hang in there, April. If you felt better once, it's bound to happen again. I would recommend trying for some quiet time if possible to meditate, focusing on positive energy to heal yourself. I would be happy to talk with you over e-mail, or you can send me a personal message via this web site.

Take care,

Amy

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  • 5 months later...

[font=Century Gothic

HI....I am new at this. I was put on 225 mg of effexor xr about 2 or 3 months ago...I have recently taken myself off of it because when I took it I Developed a pain in my hip that would not go away..I could not walk or sit or even lay down for very long because the pain was so bad. I went to the chropractor and my doctor and even to physical therapy for it, they have no answers for me.....i hve not beentaking my effexor now for about a month...since i quit taking the medication the pain in my hip is starting to go away....i was just wondering if anyone else has had this problem while taking this medication...

thanks,

tippsy

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Guest Julia59

WELCOME APRIL!

I know what you mean when you say that you felt poisoned. That is how I felt in the beginning..........

This is an amazing illness---and not in a good way---just very, very confusing----and many on this site have gone though the same dog and pony show---jumping through many hoops trying to get answers. There is still a lot of ignorance about dysautonomia out there in the medical community, but there is some light at the end of the tunnel. There is a handful of Doctors out there that continue to do research to help us find answers, or at least have a better quality of life.

The good thing about this site is that you can post any time----even on those long nights when you can't sleep due to either being wired, or from to much adrenaline.

I hope you feel more stable in the future, and will not have to deal with any more ignorant Docs.

Take Care----

Julie :0)

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