gertie

When I read the post on here I can only sit & cry. The desperation & symptoms everyone feels is so familiar to me. I have had this so many years & I keep thinking it will just go away but of course it hasn't. I have no dr that under- stands. My DH asked me to explain to him how I felt & the only word I could think of was "discombobulated" which is probably not a word. I could not begin to explain to someone that hasn't experienced this. The holidays are upon us & here I sit doing nothing. Unable to function because I feel dizzy & off balance like I might pass out at any time, just lifeless. Migraine yesterday & felt like I was about to have a partial seizure. Are these Dysaut. symptoms or am I just making every symptom I have part of this illness? Thanks for all your support.

futurehope, I applied for forum membership by email as was suggested. Do you know how long it takes for them to respond? thanks.

Has anyone ever seen anything about Dysautonomia on his show? I don't get to watch it every day & wonder if I had missed it. If it's not been addressed yet I wish everyone would send a request through to the show. thanks.

jkoconne, how are you feeling so far with your treatment? I'm hoping it works for you. I have seizures from antihistamines & cromolyn sodium caused vertigo so I don't know what to do. Best of luck!

futurehope, that's the website. Thanks very much.

jkoconne, I just read your post. I've been on a low histamine diet for a long time but I think there's more to my allergic reactions than that. Good luck! I love this forum. It has helped me a lot to have a place to go for support. Katybug, thanks very much.

This may not be an appropriate question for this forum but...does anyone know a message board for mcad or hyperhistaminemia? The only one I can find is the mastocytosis board & there is no activity there. thanks for any help.

Thank you Rachel.

Are they the same? I've tried to stay on low histamine diet for a long time. I can't take antihistamines because they trigger seizure activity. Now I'm thinking of being tested to see if I am HI. I seem to have allergic reaction to just about everything. Which should I be tested for? What kind of dr should I see? I appreciate any info. Thanks.

This is a great place to come for support & advice. Happy Thanksgiving.

Thanks for info. I wasn't aware that anyone with IC could tolerate cranberry in any form but I'll check it out. I might be able to use them. I have some D-Mannose with ascorbic acid & cranberry but ascorbic is a definite no.

Thanks everyone. It's going to be a miserable winter.

As if I didn't have enough to contend with, now I test positive for bladder infection. I can't take antibiotics so now I don't know what to do. I've had interstitial cystitis for years but always been lucky not to have bacterial infection until now. There's no telling how long I've had it because I always have bladder pain. Any suggestions on treatment?

Thanks for replies.

I get the chest tightness & short of breath & I do get nausea but can't remember if it's at the same time. How long does it last?

I do have peripheral neuropathy in my feet & legs at times but since the winter weather has started my feet are so painful I can hardly walk. They either feel cold like their frost bitten or their burning & the weight of a sheet or socks hurts. The rest of me will be toasty warm or sweating but my feet cold. When they do start feeling warm then they are burning. When I read what I posted it sounds impossible. I can't believe that symptoms like this can be related to Dysautonomia. Is this part of this illness? thanks everyone & Happy Thanksgiving!

I think my vit d level was 11. Dr said it was the lowest he had seen & started me on a supplement. It made me much worse. After a week I was so lethargic I could hardly get out of my chair & I started on low dose.

MedicGirl I had a good day for me, not as many problems at once to deal with today. One day at a time. You're due & deserve something good coming your way soon. gjensen, It is such a good feeling when we meet someone that makes an impression in our lives. I didn't take time to appreciate my family when I was well either, always busy. I've learned a lot since I've been ill but most of it is too late. I do love Damselflies & Hummingbirds, can't wait until winter's over & they're here again. Thank you both.

How long does the episode last? I experience all over shaking & teeth chattering uncontrollably at times that last a few min when I've had a shock or scare . I don't feel cold but I can't stop shaking. I feel it looks like I'm having convulsions but I'm conscious.

Thanks MedicGirl, You are in my prayers & thoughts.

Thanks for your replies. It means so much to me to have you to talk to. I do have autoimmune problems. I'm through whining now. looneymom, your son is so lucky to have you. It must be extra difficult for a child. Becia, I hope things get better for you soon. I hate leaving my home (my comfort zone)for any length of time. I'm afraid if I start crying I will completely lose control & never stop. MedicGirl, I can't imagine the stress you're going through now. It makes my problems so trivial. I hope you have a full recovery. I have always had animals & even bottle fed some orphans & they were my babies at the time. I lost the 20 + year old cat I adopted when she was a baby. She had been my constant companion for over 20 years. It was the hardest loss yet I'm still mourning her. I don't have the physical strength to take care of another one yet. Maybe someday.

Let me begin by saying I am very thankful for what I have & how well I am compared to a lot of people with terminal illness. But I do have times I think of all the living I've missed over 30 years. My body goes from having migraines, partial seizures, costochondritis, neck pain, fibromyalgia, Meniere's, degenerative arthritis, thyroiditis, gallbladder attacks, IBS, bladder, nerve pain, heart arrthythmias, severe chest pain, & on the list goes. I don't ever seem to have a moment I'm not stressed from something going wrong with my body. I can't remember a time I was not miserable from something. Even dread being awakened from sleep with severe pain, never knowing if it is something I need to have seen about or if it will pass. Sorry for long vent. I can't take med's so I'm limited to what a dr can do for me so I'm trying to suffer in silence & not cause anxiety for DH. No one understands anyway. How do you cope with this?

I have that problem a lot especially if the food is dry like chicken or baked potato etc. The only way I can eat a baked potato is to put a ton of butter on it so it will go down. I have thought I was going to choke and once it gets in my chest area it hurts, feels like it is cutting my esophagus. I also have some kind of a hiccough that starts & continues until the food finally gets completely swallowed. My chest usually feels uncomfortable for awhile after things get down. It's hard to describe but it is frightening. I try to be sure & take small bites & chew well.

I have been in your situation for years. At first it was very lonely & depressing. Now maybe because I am so sensitive to fragrances & everyone seems to take a bath in perfume before they visit I actually prefer to be alone. I know that sounds harsh but I'm so much sicker after their visits. I just don't have the strength anymore to deal with it. I do enjoy phone calls but most people text & maybe because I'm older I hate it. I do miss the personal contact & the feeling of having friends to talk with. Summer is easier for me because I can feed Hummingbirds, birds & wildlife or have flowers to look at. Winter is very dreary. Sorry I can't be of help.

Thanks for your comments & info. I don't ever want to go through that again.