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Help! Confused!


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:P I have been suffering from spells of fatigue, dizziness, tach. and feeling generally ill since my daughter (#6) was born in October. I actually passed out at the hospital but was told it was just from having a baby. When many dr.'s diagnosis' were proven wrong they would suggest an antidepressant. My newest dr. told me this week that he feels I have dysautonomia. I had a negative tilt test but have tachycardia and arrhythmias. I also have terrible food sensitivities. As weird as it may sound I am afraid that this might not be the problem and I will be back trying to figure it out on my own again. Does any of this sound familiar to anyone and do any of you have ANY suggestions? I just want to feel good again and be able to enjoy my children without dragging what feels like another body around. Thanks for hearing me out.
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I'm new to this forum so I don't have much advise to give.(Sorry) I am a 28yr mother of 3 (6,3 & 13mo.) I give you alot of credit. I always wanted four children but that's all in the air do to my new health issues...6 would be a handful expectially when your feeling sick. What are there ages ? Where are you located? I got sick in Aug 04 and I wish I could return to normal and be the active mom I once was.I tested positive on the tilt table test but haven't talked to my neurologist yet. It sounds like your experiencing alot of the same things we are. Did you look at the symptoms section on the homepage?

Well I wish you alot of luck in searching for your answers. I have learned this group is a great support system for me. If you have any questions just ask and alot of caring people will respond.

dayna

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A negative tilt table does not rule out autonomic dysfunction, so don't give up. I had a negative one too, but definitely have ANS disorders. They can overlap. You may also have chronic fatigue or fibromyalgia. Do you have a lot of pain anywhere. The symptoms for these can be so varied and unpredictable. At least you found a doctor who knows a little about it. You have to just keep pestering them. Do you have other symptoms. Does your bp swing around, go up and down or just stay high or low. Can you give a little more history? Welcome to the site and I'm glad you decided to write! morgan

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Thanks! I appreciate you helping me understand what all this means. Dysauto. is such a vast diagnosis.

I do have up and down BP but it has improved since Juli was born. I can at least walk now without falling over and I can function at a greater level. I have not a problem with pain I just get sore real easy.

I started having problems with food sensitivities right after I was married 14 years ago and have had to watch everything I eat. I have a bad reaction to sodium nitrate. Everyone thinks thats crazy and so do I but it makes me real sick.(vomiting, dia, and fainting...yuck) My dr. stated that food sensitivity goes with it. (if so it really puts a lot into perspective) All stayed the same untill Juli was born and the blood pressure, pulse, fatigue, dizziness, weakness and sick feeling started. So, I am now waiting to see where my journey will take me next.

You are right in that if I did not keep pressing how I feel I would never find out whats wrong. I was so tired of hearing about how nothing is wrong with me but I am thankful that someone finally is trying to help.

I am just wanting to make sure that I have it right this time and not accept this diagnosis only to be told later "Oh thats not it". I have experienced that to much already. Again I appreciate your time and greater understanding of this disorder and continue to ask anyone who can shed more light on the subject to please reply.

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Hi,

Like Morgan said a negative TTT does not mean you don't have the disorder. It might mean that you had a good day. You also have to look at the overall symptoms. I would ask for a repeat TTT when I am in a POTShole.

Ernie

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Medication and food sensitivities are a big part of the overall picture. Many of us come on to get encouragement just to start a new med! I don't know what I would do if I still had little ones! My grandchildren wear me out in an hour or so. :( There are so many aspects to this illness, I know I have been seeing my primary for a very long time, like 20 years, and I would go in all the time with some really weird symptom he had never heard of. He thought I was a little flaky, but at least he believed me. He told me that honestly, if I walked into his office with all these odd symptoms, he would really wonder until he got to know me. He was the one who said I needed disability. He has read all the literature I bring him over and over and he talks to other doctors all the time about me, but no one in this area really understands it. They know it if you say it, but don't know anything about it. So, that's why you have to persevere. You are a little closer to all the specialiats than I am, I live in Wa. state, but sometimes that doesn't even help much. Just don't let anyone convince you, you are crazy. Everyone here knows how you feel and we all understand your frustrations at feeling poorly and being told there's nothing wrong. I'm glad you found this site. It has been a lifesaver for me and I know many others have found, help, encouragement and friends here. I hope you feel the same way. :) morgan

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Guest Mary from OH

Have you had a 24 hr Holter monitor (EKG) done? It might be helpful. Also, I'm sure they did the "nomral" checks for thyroid problems etc.?

Hang in and keep pursuing things. You are not crazy and don't suffer needlessly. Have the drs figure things out I think many of us thve learned that it is not easy for them to do.

Did you see an electrophysiologist for your TTT?

Good luck to you!!

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Dayna,

I don't have much time to give a lengthy response. First, off welcome and feel free to ask all the questions you need to. It's common for women to develop dystautonomia/POTs after birth, if that is indeed what you have. My tilt table does not reveal anything either, but my BP is chronically low and i have tachy and arrythmias and my entire ANS is out of whack. I have been officially dx'd with POTs in spite of my tilt table results being negative.

As far as food sensitivities, these are common with dysautonomia. Believe it or not sodium nitrite is a fairly common allergen/food sensitivity among the general population - many people just never discover the trigger.

A lot of us on the board also have celiac or gluten sensitivity. Do you notice sensitivities to grain products like wheat, rye, barley or oats? Have you been tested for celiac. The reason I ask is because when I first started showing symptoms of celiac, my nervous system went haywire, I had tachycardia and arrythmias often after eating (but I couldn pinpoint what was causing it). I also had food allergy testing via blood (not skin testing) and discovered I had become allergic to almost everything under the sun.

Once I was finally dx'd with celiac, I went gluten free and excluded all foods I was allergic to for 90 days. After 90 days I gradually added back the allergic foods over time (except the gluten foods). My stomach and intestine healed over time and I now only have a couple of food sensitivies in addition to gluten. I had developed a common occurance called "leaky gut syndrome", which is a contributor to food allergies/sensitivities.

Anyway, I'm getting long-winded, but If you want more info, just email me. I know this can be soooo very frustrating. Best wishes. :(

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I am a 23 year old mom of (soon to be) 2. My most prominent symptoms are very similar to what you describe- food sensitivities, tachycardia, arrythmias, etc...I had digestive problems since I was about 12 years old, and did not get tested for food allergies until 17 years old, so I suffered a lot during high school not knowing what was wrong. POTS hit me very hard when I was 19, and I have been dealing with it ever since- with good and bad days like we all have- but have been overall lucky enough to keep my case "mild" at best. I too had a negative TTT two times- once with my cardiologist and once at Mayo Clinic. I have never passed out...but still definitely have come close many times and felt just horrible.

Just one more suggestion- I had already been tested for fibromyalgia, CFS, Lyme Disease, etc...and all came back showing that I did not have those conditions. However, after my son was born in 2002 I continued to have increasing amounts of fatigue- a lot more than just the typical new mom syndrome :( I finally ended up seeing an autoimmune specialist last fall who did some further testing and found that I DO have traces of Lyme disease, and also an active mono infection that never seems to go away. He seemed to think that Lyme could be the cause of all my nervous system dysfunctions, and so after this pregnancy he will at some point start treatment for that to see if I improve at all over time. I just found it interesting that the basic tests for Lyme & Mono (EBV) came back negative, when indeed there were trace amounts in my system that were enough to conclude a positive result.

I commend you for keeping up with your 6 children...I really love being a Mom and it has been the best thing that happened to me since POTS. It allows me to think of someone besides myself every day, and really takes my mind off of things at times. I would love to have a house full but I think we've decided to stop at 2 for now :) I wish you the best!!

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Hey, welcome. :(

You sound like a dysautonomic to me. What kinds of things do you do to control your symptoms? I fluid load, eat extra salt, try to get good rest, etc. - you really need help to take care of yourself, with that many children. Do you have a support system?

I recommend the book, "The MVPS/Dysautonomia Survival Guide". I think you'll see, after you read it, that you may very well have finally reached the answer as to what's going on with you.

Take care - as much as you have the time for, anyway... I hope you get some good help with the kids.

JB

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