DSM3KIDZ

(((((((((Big gentle hugs))))))))))))))

Dayna

Been a stay-at-home mom for 9yrs. to 3 kids 9,6 &3. I think I will continue staying at home till things improve right now I couldn't hold down a job and keep up with all the kids stuff.

Dayna

I just got dx with chronic sinusitis My left sinus was completely decompressed and I have no sx of sinus infection, not even a stuffy nose but I do have TONS of migraines on the top of my head right above my forehead. Does anyone else have experience with this and once treated did they have relief in their migraines? They found this on my MRI. I need antibiotics for 3wks, prednisone for 10days and a nasal spray.

I have my fingers crossed that once this is treated it could help with the uncoontrolable migraines.

Dayna

Happy Birthday to you!!!!!!!!!!!!!!!!!

Dayna

Let me know how the med works. I deal with alot of anxiety and it's one of my worse sx next to migraines. I never had a panic attack but always feel wired on the inside. I think mine has alot to do with POTS because my Cymbalta is just not taking the edge off the anxiety...it really ***** and I hope you can find some relief soon.

Dayna

I don't know of this doctor but noticed that you were going to Children's Hospital in Milwaukee...........I live about 10 min from there and see great doctors at Froedart. I see Dr.Barboi he is an autonomic specialist. Do you live in Milwaukee? I have a 9 yr old ddaughter and 2 boys, I can't imagine what your going through as a parent. I'd rather suffer thiis illness than my daughter anyday.

If you need to compare notes or anything feel free to PM me. Also Froedart has an Autonomic Lab that does the Tilt table, Sweat test, Electrode and breathing test.

Good luck to you and your family

Dayna

I wish I had known you were going to Milwaukee, that's were I live.

Dayna

I just wanted to say hi and welcome you to the board. I an also a mother of 3 and read your log and feeling compassion for you. I don't have chari or EDS but alot of other health crap going on.

I hope you meet alot of people here.

Dayna

I was given this med for narcotics w/d. I've been on vicodin for 6 mon. for migraines and want to try something new. When I tried stopping the vic I got horrible w/d so the clonidine is suppose to help with this. Weird that it's used for pots patients but I haven't done my usually research on the drug because I just want the vics out of my system.

Dayna

Never did and never will too scared!!!

Dayna

Have you tried the B12 shots? Have you started any new medications? Also did you have a virus or anything before this all happened because I'm thinking maybe it set off CFS or something.

I'm really hoping you can get some answers soon I know you want to get bad to feeling baseline.

Hang in there sweetie were here for you, your an Upper to us not a downer I just wish you were feeling more up right now.

dayna

Oh I hope she starts recovering soon. My prayers are with her.

Dayna

I get really dizzy if the other person in my conversation is going on and on. I just get overwhelmed and feel anxious.

Dayna

Still searching for a migriane preventative since I have to take a bb anyways why not try it. I take bisoprolol right now. What are the side effects some of you experience from inderal?

Dayna

I also have Autonomic neuropathy specifically Small fiber neuropathy. My docs told me basically it's just an umbrella term for Autonomic Dysfunction but I guess it can affect more systems than if you had Primary POTS. My sx are the same as most on this board except I have gastroparesis and migraines caused by the AN. Which it seems like alot with the Autonomic Neuropathy dx have, well even those with Primary Pots have GP and Migrianes. I'm rambling here but it's all so confusing I guess I didn't answer you questions. I still question it myself and I've been dx for 3yrs.

Dayna

I can function 90% on vicodin about 45% off. I take it for migrianes and wish my doc would px it on a regular basis but he would freak if I asked. I get so sad that I can function so well with it and have to suffer without it. It actually makes my hr and bp completely normal. Plus it gives me a ton of energy which I like. I only get to take it 2x a week but that's when I get everything done.

Dayna

I drink alot of gatorade. I take it if I need to run an errand. I like orange the best.

Dayna

Sorry about he bad reaction. Fiorcet works for me sometimes and sometimes not. Unfortunately I have to take the 2 every 2 hrs till I hit 6. Doctor doesn't like this but what are you gonna do. Also it makes me pretty tired.

I hope you find something that works. Have you tried a preventative yet?

Dayna

I feel so bad for you, I suffer from migraines and it's brutal and than not having a doctor helping you must make amtters alot worse. What reaction did you have to Fiorcet? That helps me some times, sometimes not. I am also a complicated case, antisezier meds make me sick, triptains give me rebounds and pain meds don't work well at least not vicodin so I'm still searching for my cure. PM me we can discuss the things you have tried and maybe I'll be able to recommend some things you haven't.

Hang in there I know this *****!!!!!!!

Dayna

I got my first POTS sx when I was 27.

I'm glad Chrissy is doing better. I have been throwing up from a migraine all day but I don't think they are complex migraines infact I don't even know what that is. Goood luck at the neuro appointment and I'm glad it was not a stroke.

Hang in there.......both of you

dayna

I so sorry to hear all that you are going through. I remember growing up thinking doctors were CARING people that WANTED to help people feel better both physically and mentally. Boy have I learned the opposite since I became chronically ill.

I'm so sorry for the loss of your friend hearing that breaks my heart.

If you don't mind me asking, what is RSD?

Dayna

I hope your head is better. I hate going to the ER and I'm sure we all do. Get some rest

Dayna

I take this only for seasonal allergies but just wanted to post hoping you find the info you need and than it helps with your breathing.

Dayna

I hope your feeling better at home. It was so nice to be able to put a face to all your posts. I read the newslettter and it was very inspirational. I hope your proud of being such a strong example to us all. I really hope you get to stay home for a long time now.

Your always in my prayers

Dayna