DSM3KIDZ

Oh sweetie I feel your pain, I really do. I just had a vent post yesterday I don't know if you read it but I am going through the same thing except you worded yours better. This illness is so hard on everyone but most on you. So if everyone is feeling frustrated if they would just walk a mile in your shoes they would realize your frustration is 100x greater. Not to make little of their feelings but we are the ones who are actually living in this nightmare. My husband told me yesterday the one thing I haven't tried is exercise. Like I don't know that. If I didn't feel like puking my guts up every minute I would try. I would love to try. I remember the only physical pain I had to endure was exercise I wish I could get that life back. Do you have children? I was just wondering if you had any suggestions on that aspect. Just know that your not alone and we are all here for you and understand what you are going through. If you need to talk you can always PM me. Tell everyone to back off and you will push harder when you can. But for now you need to get your strengh back from having such a bad period. Hang in there Girl Dayna

Hang in there. My heart goes out to you. Thanks for giving us an update Dayna

Thanks everyone for your imput. Everyone had great advise. I am really hard on myself which doesn't help. Like any good parent I just want the best for my family.......including myself. I guess right now I have to go with the flow and hope that the days get better. After fighting everyday to get up and put on a smile sometimes it just gets to be too much for me to handle. Thanks that I have this site to help put things in perspective. Trying to smile Dayna

Lori I have Autonomic Neuropathy along with POTS and Gastroparesis. dayna

How do you guys keep from crawling in the bed and never getting out? I'm sorry in advance for the vent but I need a release and you guys are the only ones that understand. I can't seem to pull myself together. I've been doing good staying positive for months but I just constantly feel defeated. When I was first sick in 04. I would get sick for a few weeks than feel 100% for a few weeks. I hated being sick but I lived every moment of feeling good. Now I'm just sick all the time. Every day it's something. Dizziness, migriane, fatigue,nausea,bladder pain etc. My friends and family tell me it's always something. I hate this because it IS always something but something that I have no control over. Do they really think I am enjoying this???? I am missing out on so much with my kids. Not that I don't see them but my patience is wearing thin, we'll be doing something fun but I feel to crappy to enjoy it. A few times a month I have the kids on my own because I'm always sick and I'm thankful for the help but I also resent it because that means I'm not well enough to take care of my own angels at the ripe old age of 29. If I could just see the light at the end of the tunnel. Thanks everyone Dayna

I just got back from the neurologist for my dizziness and she said my bp was good so it's not that. My hr goes up to 108. She thinks it might have to do with a migraine. She suggested trying mestinon again and in May for my next appointment possible trying a beta blocker. She said it will also help with the migraines. Anyone have success with BetaBlockers for migraines? Dayna

I hope this question is not to personal. I notice there are a few threads on IC (Intersistical Cystitis- however you spell it). I was wondering if alot of you have this dx or bladder pain or overactive bladder? I get these episodes where for a day or two I'll have to urinate many times and feel like I have to go after I just went. I usually urinate alot but not this much. Then after I empty my bladder it will burn somewhere deep inside (assumming bladder). This makes me VERY VERY Agitated. I think that weird burning feeling is worse than any other symptom I have experienced since it makes me sooo agitated. I have been to the doctor thinking it's a bladder infection or UTI and nothing except a small amount of blood in my urine everytime but they take it to the lab and it's always "nothing to worry about". I want to know if this is a symptom of dysautonomia? I am deathly afraid of getting the IC dx because I read some horror stories about it and personally I can't handle any more stress so I haven't seen a urologist. From what I understand this is another illness that has no cure and very little treatment. If any of you have these symptoms, what helps??????? Thanks for letting me have bathroom talk Dayna

Yes I always have pain between my neck and right shoulder. If I stand for 10min. it starts getting sore. I had this before getting sick with dysautonomia. Dayna

I agree with going to the ER. The same thing was happening to me last year, except passing out and I was so dehydrated that they kept me for 4 days. If anything you'll be able to get the fluids. Hang in there and keep us updated Dayna

We'd rather have you "jump in" the more imput and suggestions the better. I don't know if I welcomed you to the site but WELCOME and I hope you feel the support from all these wonderful strong people. Dayna

I actually experienced something like this for the first time last week. I felt like I was insane because it felt so scary. I don't know what it is but I hope it never happens again! Does this happen alot to you? Dayna

Thanks Katie I think that drug is compazine right? I tried that awhile back for my constant nausea and had some scarry side effects. Thanks for your response though. I don't work outside of the home but have 3 kids so that's alot of work. I feel I've been getting the sleep, avoiding stress and eating good so that's why I think I'm going to have to try a med...............or hope it passes soon. Thanks Again dayna

I hope she will be alright. I'll pray for her. Please update us Dayna

I have been experiencing lightheadness alot lately so much that I'm scared to drive and it's making me also feel anxious. I'm also alot weaker and tired than normal. Anyways I have a neuro appointment on Monday and I need to be armed with information seeing as she always asks which meds I would like to try. I hate that because I would feel more confident if she told me exactly what I need to try. What meds help all of you with being light headed? I know everyone is different I would just like to know your experiences Dayna

Stacy I don't live in NY, Milwaukee Wisconsin actually but I feel your hurt. I have been having a really hard 2 wks and feel very discouraged also. It would totally help to personally know some people who are going through this so we don't feel so alone. Everyone keeps telling me it will get better. Well I hope it does but for now it's ruining my days and I need to deal with the nows, not the laters. Anyways I don't live by you but if you ever need to talk you can email me dsm3kidz@yahoo.com. Hang in there Dayna

I'm so sorry your having such a horrible time. You must feel scared having your vision messed and irritated as you've been through alot already. You are definitely a fighter since your still able to get to work. Keep up the fight and I'll pray that your doctor gives you some hope on thursday. hang in there Dayna

Have you done that gastric emptying study? I have gastroparesis. I was searching for the cause of mine and that's how I got the autonomic dysfunction (neuropathy) dx. They all started at the same time i guess. Anyways the only sx I have is the nausea. Some can have bloating, full after small meals, vomiting, and throat issues. I don't think it's the same as IBS. I know a few people on this site and gastroparesis site that have both ANS problems and GP. I hope you get the answers you need. Hang in there Dayna

I don't live in the area but am also a mother of 3 small kids (7,4 &2) so if she ever needs someone to talk to via email or phone I'm always available. also how are you holding up? I know this illness takes alot out of my husband since he's now the primary care giver. I help as much as I can, somedays it's alot and some days it's just small things. I know he wants to fix it and is very frustrated with this illness (not with me personally). I just wish it was over and this was just a bad nightmare. Well I wish you all the best and congrats on the new baby (boy right?) Dayna dsm3kidz@yahoo.com

Sorry to hear your having a problem with the nausea. Now I'm having problems with the dizziness and the nausea has lessened some. Maybe we switched places. I feel this illness switches systems. If I'm not nauseated I have a migraine, if I don't have a migriane I'm dizzy and so forth. The acid meds helped me alittle but being on domperidone has helped and I also take nausea meds as needed. I stopped the acid med a few months ago and didn't really notice a difference. I forgot have you had the gastric empty study? Dayna

I also didn't have Pots before my 3 deliveries so my only advise is follow your gut. Mommy knows best Dayna

I'm glad to hear that you survived your test. My hr went up high and then leveled out and then went up real high toward the end of the test again. I would also start the meds. Let us know how it goes and what the doctor says your results are. Now you can relax since the test is over. dayna

I don't live near you but just wanted to tell you I'm sorry your having such a bad experience with these doctors. I never in all my life thought I would be sooo disappointed with doctors. They are suppose to help you not hurt you. So sorry Dayna

Thanks for participating. I hope it was worth your time. I hope stopping the Topamax helps. I keep my fingers crossed for you. Dayna

I'm excited for you...nice color! Happy cruizing to you Dayna

I agree with everyone that posted here. See a Urologist or Gyno. I'm need to take that advise also. Sorry to hear you were in the hospital and still feeling bad. I will definitely keep you in my thoughts.... Hang in there and keep us updated. Dayna