DSM3KIDZ

I am pretty much only sympomatic to the point I can't handle during my hormone changes. I actually realized I'm worse around ovulation time than I am during my periods, even though it ***** around my periods too. I've always had more pain and stuff around ovulation pre POTS . I don't know if this is common or not but than again I never fall in to the "common" category Dayna

I just wanted to say I hope things get better for you. I don't have any suggestions on meds. I just started my first mestinon so I'm not familiar with any of them. We are here for you and I hope you can get the right combination soon. You'll be in my thoughts. Dayna

Thank you everyone. Your responses helped me alot. I'll give it a try. This is my first med I'm trying for POTS so I'm alittle nervous but I feel I'm not improving much on my own. I'm still going to do my vitamins but maybe this will give me an extra boost I need.

I just had my neuro follow-up. She said it was okay to go ahead with the vitamins but also wanted me to try mestinon. She said it would help with motility and POTS. I will do a search later (home alone with kids) but was wondering if anyone had any imput before I pop my first pill. Also has anyone had good results? Dayna

I am curious some of you posted accupuncture for migraines. Does that help them from occurring so much or do you do it when you have a migraine and it takes the current pain away? Dayna

I'm so sorry you down. Your not alone. I think it's great when someone comes to us to give them strengh and reassurance that is deeply needed. Because unfortunately the people on this site are the only ones who seem to TRULEY understand. I'm sorry your in so much pain. Hang in there and I hope you get relief soon. Sending my caring thoughts to you Dayna

I was wondering if dysautonomia changes systems? What I mean is when I'm nauseated I never have headaches/migraines, than when the nausea subsides I immediately get headaches or migraines. I continue getting chronic headaches or migraines until the nausea comes back and than my headaches/migraines go away. This is how it's been for 2 or 3 months straight. I just starting having headaches and migraines 3 months ago so when my tum was good, I was good. Now I don't seem to ever have a day without either nausea or headaches. Somedays it even switches by the hours. It really makes me feel like a hypocondriac (however spelled) because I'll tell my husband I'm sick to my stomach than few hours later I tell him my stomach is fine but now my head hurts and it's been a cycle of complaints. Do you ladies experience this? It's very fustrating. Any clues? Is this a sign this are getting worse since I don't have many normal days unless I am on nausea meds or migraine meds? Thanks Again Dayna P.S. I checked out dynakids today. I was crying, those sweet kids seem to be coping better than me. They are so strong and I was really touched by their stories. I can't imagine being a kid with the thought of an unknown future. They are my new inspiration. I think I'm going to register there since it says to age 29. I'm 28 and no longer a kid but like I said they inspire me just like you cool chic's do. Thank You.

Just a question because I know nothing about Chiari, how is it dx? Is it just based on symptoms or through MRI testing or something different? Dayna absorbing as much info as possible

I have bouts of feeling down and depressed before my periods. I also have mood swings but that's all do to the hormones. dayna

icthus- thanks for your reply, you did a good job. also thanks for your support, I am hoping for improvement. Every little bit helps. I'm sorry to hear about your husband and commend you on raising to teenagers as a widoe. I have 3 small kids (6,3 &1) and I can't just sit back and be sick all the time. I have to fight for my health and if traditional methods don't work than I'll have to a least try the alternative. If the end if I'm still where I at (not a happy me) than at least I can say I tried. I've also tried chiropractic which helped some, hydroclonic therapy which helped me feel better but it was just to invasive for me to continue and stopped helping. I also juice which give me my energy. So good luck to you, I'll keep you updated because my nutritionist lives in IL. I think that's near you if I remember correctly. Dayna

Thanks for that info as I was debating on seeing a chiropractic neurologist who does manual manipulations. He said I had a problem at my brain stem. I have been nervous because I don't want manual. Currently I see a chiropractor who uses a manipulation tool I don't know how effective it is but there is no manual pulling, cracking, or tugging. They just use a tool and click it on problem areas. I know it has helped with my nausea and shoulder, neck stiffness. Maybe I'll just stick with him since there are no risks of hurting my neck or giving me any extra neurological problems. Thanks Dayna

What is PMT?

Sunfish- no the chiropractor is not an MD , I guess he just has extra training in neurology. I'm still debating on him because I don't want him to screw anything up. I am nervous for the vitamins because I do have slowed gastric emptying (gastroparesis) and my stomach is already nauseated alot. I guess I'm just going to give it a try. Some of the vitamins are liquid so it will be easy to digest them (calcium, magnesium and potassium.) But yeah, I guess I start them all at once. Some of them I only take for 60 or 90 days then we try getting off them one at a time and I get re-evaluated every 3 months to see my progress. How did you help you stomach problems? I desperately want to be able to digest better so I can eat more protiens and veges and salads so I can be healthier. Thanks for your response. Dayna

Thanks for bringing my attention to this story. It's definitely a step in the right direction!!!!!!!!!!!!!!!!!!!!! I'm going to print this for my family. I'm also happy to hear the girl will be getting some help. I can't even begin to imagine being ill at a young. My heart goes out to her family. dayna

I am so sorry for your loss, you and your family are in my thoughts. As for crying I find that I am also more sympotmatic but just thought it was because I was feeling stressed so my body was too? Sorry again, dayna

I am sick of being sick (and so is my family) so I'm giving one LAST effort to alternative med. I am so broke from trying to find the magic cure so this is my last effort. I cross my fingers and toes that this will make my body stronger and possibly heal. Or it could just be another wasted effort. I can't get to the point of acceptance but I'm going to have to learn to cope better if this doesn't help. I know it's no miracle so chances are I'll be dissappointed but I have to at least try. There is a member on this board who's mom is a nutritionist specializing in POTS. Well I met with both of them a few months ago and just decided to meet with her mom last week. She uses vitamins and supplements to heal the body from the inside out. She focuses on the mitricondial cells. Her daughter had real bad symptoms after broncitis and now she is 98% normal. I know her chances of healing are probally better because she was post-viral and I'm unsure of my cause (viral/or stress) all I know is it came on as quick as I can snap my fingers that's why I holding on to the hope of healing. Maybe something just got wacked out in my system and in time it will correct itself. I know, it sounds like wishful thinking. Now don't laugh at me if in 3 yrs I'm still posting and sick. Anyways she also recommended a chiropractic neurologist. I see a chiro now but he's not a neurologist. She said he really helped in the healing process for Kristen. He's located in Hartland, Wi. If anyone's interested. Well enough blabbing. I'll received my vitamins on Mon (16 -that's alot) and I'll keep you posted on my progress -or lack there of. I know stay positive. I'm trying but it's hard. I hope everyone is recovered from there holiday weekend---I'm not. Dayna

I've been here a few months but never answered these questions Dayna age: 28 POTS-Autonomic Neuropathy, gastroparesis dx: 27 Milwaukee , Wi Symptoms at worst: Nausea, Migraine, Depression, Anxiety, Heat intolerance, fatigue, blurred vision Symptoms at best: mild headache, mild nausea. didn't work: Reglan, Protonix,Compazine works: Aciphex,-as needed Phenegan, relpax, xanax .25mg Haven't tried any meds for POTS yet.

Sunfish - I agree with you completely. That inability to plan anything and never knowing how you'll be on any given day is also the hardest part of this for me. Like I've mentioned, I'll be great almost normal for 1 or 2 weeks than sick for two or three. But I have never gotten through a complete month of feeling good. Than when I'm down it takes alot to get better. Basically I feel like I get a bad flu every month. I always get anxiety wondering when it will be bad again. Also family don't understand the ups and downs. I'll be soooo extra happy when they see me than next time I'm sick. I really think alot of my friends think it's in my head. They always say "your sick again" Dayna

What a relief!!! I'm glad it went so well for you. Dayna

Sorry I couldn't post earlier, been kinda loopy. I'm sorry to hear how your feeling. It breaks my heart because I can feel it to and I hate to think of someone else feeling so down. I'm glad to see that you have a plan. That seems to help me hold on to hope. I live in Milwaukee so when your passing by, send me a wave! I hope this doctor can help you. Good Luck and I'll be thinking of you. dayna

I also live the rollercoaster life. My symptoms come and go over weeks. Example- I'll feel 100% for 2 weeks and like complete dodo for 3 following. Sometimes the dodo time is alittle less sometimes it's more but it's always followed by at least two good weeks. So when I'm doing bad I just sit and wait for the good. The only really hard part is dealing with my emotions because when I'm down, I'm emotionally down. When I feel good I'm emotionally GREAT! I still don't have any triggers, I'm clueless!!!!!!!!! Dayna

I was just curious why to increase salt? My neuro never told me this I just read it here. I've added some salt to my water but it doesn't taste that good. It did calm my headache alittle. I've always learned high salt diets are bad for you. My question is how does the salt help? I believe it helps but my husband asked me why up salt intake and I had no answer for him. I know you smartie pants would know the answer to this. Also how much salt? Is there a specific recommendation or just as much as you want? I'm cluless about alot of this stuff but am eager to learn. Dayna

Thanks everyone for all your imput. I don't know why I have POTS, Autonomic neuropathy or gastroparesis. It happened overnight which I feel was caused or triggered by a stomach virus or stress. So I guess I'm going to give "pushing myself" a try for awhile. I feel like crap anyways so why not. I ran the last two days but decided to run 1 lap and walk 1 for a mile and that helped cool me down alittle. I didn't experience nausea like last time. Just a headache but I'd have it regardless. I just want to lose alittle weight while making my body stronger so I can try to get back to myself. I figure if you can make your body strong maybe it will help heal it!! Or maybe I'm hoping for the unrealistic but it's a trial and error thing. If I start getting sicker I'll obviously stop but I need to know if I can fight this from taking over me. As many of you know I've been real depressed about my "new life" and I just don't want to feel that way anymore. I want to some how have some control over my life and I hope exercise helps me with that. I need to keep up with my 3 cuties and would some day like to expand my family more but if I want that to happen I have to get in the ring and atleast try to fight. If I lose the fight than I'll have to search for acceptance but as of now I'm having a REAL hard time with that. I feel overall compared to last year (sick since 8/04) I'm improving without meds and I hope it continues. I know it takes time for the body to heal so I'll be patient since I have no choice. Thanks for all your advise. I wouldn't be able to push myself if I didn't get to know everyone on this board because I read about all of you pushing yourselves to have an enjoyable life even through the bumps in the road. I'm proud of everyone on this site for being as strong as you all are. Just think if you put us all together maybe we'd be strong enough to conquer the medical field and get them to step up and challenge us. Good night Dayna

I just wanted to say congrats and I'm glad you had a good time. You have to hold on to those memories and they will get you through the bad times. Dayna

I decided to start exercising again because I'm sick of sitting on the couch being depressed. I've been learning the more I occupy my mind the more I don't concentrate on feeling crappy all the time. I've been like a mom on speed lately. I don't want to stop because when I do I feel all my symptoms. I'm probally over doing it but at least I don't feel depressed and sick every minute. Today I ran a mile. I walked some and took a drink inbetween each lap. I don't have a heart rate monitor but my husband is an EMT and would check my pulse before letting me do another lap. At the end my pulse was high and I felt real nauseated but it was very humid and my husband thought it was okay since it was so hot and I didn't run in about a year. My question is if I push myself could it hurt or help? I need to lose 10-15lbs and becasue of gastroparesis I just don't get the proper nutrition so I can't go on a diet. Besides I eat good but I never lose weight from a diet. Only exercise. So has anyone pushed themselves with exercise and found it made you worse? My plan is to run a mile 3x a week and than do some light weights inbetween. maybe do some pilates or yoga on days when I just can't handle much. Let me know your thoughts dayna