gertie

I had the same diagnosis almost 2 weeks ago. Blood no bacteria. However, I do have Interstitial cystitis & at the time urethritis. I had much pain in my lower abdomen but at the time I thought I had strained myself moving furn. but it was probably the IC. It can be very painful. Do you have urinary frequency?

I am so tired of having to find out every little ingredient in a medicine before I take it? I'm sure my pharmacy thinks I'm a mental case. I need some meds compounded & must find a gel or cream that I can tolerate. I'm trying a couple different bases to see if I can tolerate them before they add the med. My heart does flip flops & skips all the time. How will I know if it's the creams causing the problem or just dys? I hate being a wimp. Thanks for your comments.

Also, I had a weird experience on Sunday where my adrenals were in high gear and my heart was pounding whenever I tried to stand up for more than a few minutes .. I'd eaten some Cinamon Rice Chex (gluten cross contamination + chemicals) that I think caused this but I really don't know for sure. This was the first time I've ever experienced this degree of adrenal stress / heart palps. I was wondering if this is what many of you are experiencing ? I have the same experience when I eat anything with cinnamon + I get a migraine. I thought it was because cinnamon dilates the blood vessels. Could you allergic to it?

Thanks for your reply. I'm beginning to wonder if anything is ever going to be normal again.

Mine are pretty much what you described. Sometimes it feels like it is beating out of my chest. Sometimes it feels like it stops or beats so erratic it makes me cough. It beats 2 times, skips, beats 3 times skips. At times it seems it isn't going to start beating again. HTH.

I have Hashi's & test positive for the antibodies. I have not been able to tolerate the thyroid meds and had not been taking them. What is strange to me is my last test was normal so I don't need meds. I've been having these ups & downs for the past 5 yrs.

My PCP says I need to get my BP under control. When sitting my BP is 156/76, when standing 143/86. I feel better when it is higher because if I have less syncope. I don't understand why when I stand the top top number comes down 10 pts & the bottom goes up 10 pts. Is this normal to do this. thanks.

Fantastic! Isn't hope a wonderful thing? Keep us posted.

Neurontin did not help with energy but made me more "sluggish". That is why I stopped taking it everyday. Good luck with Lyrica.

I've tried many different kinds over the years & have the same weird side effect. I felt sure the topical cream would be a better choice than pills or pwd but I had same reaction to it. I obviously have an allergy to it. thanks for your comments.

Neurontin has never raised my BP & I have been on what I call massive dose for a long time but everyone is different. I would think it would help lower BP because it has a calming effect on the brain.

I've had eye problems since the onset of Dys. I've had vitreous detachments, double vision, lost partial vision, blurry, things appear to be moving, flashing lights, dots floating on the walls etc. The strangest thing is sometimes when I look at a color, usually red , when I look away everything still looks red for a few min. I don't know how much of that is from Dys but I didn't have them before.

I was on Neurontin many years as a migraine & seizure preventive. At that time I was taking anywhere from 3600-5600 mg daily depending on how bad my symptoms were. As my migraines became less I gradually came off the Neurontin per my dr's instructions. I am taking it again but only as needed. I have never heard of anyone taking it this way but my dr approved for me to try & it works better for me this way. If I have burning legs, migraine, or just need it for rest then I take it same as you would an aspirin. I may have to take it for 3 or 4 days at a time. It's my understanding Neurontin & Lyrica are about the same. Neurontin has a lot less fillers & dyes than Lyrica & because of my allergies I chose Neurontin.

Does anyone have an adverse reaction to mag? I always feel as if I will pass out or seizure when I take it. What could cause this? Thanks.

When you have a MMG do you notice any after effects? I guess this is my imagination working overtime again but for years I've always felt so tired after. Maybe it's because once it's over I relax. Thanks.

Thanks for your comments. It seems it might be better than Tamiflu. At least it has less fillers or additives.

Has anyone used this for the flu? I read that it does not have the side effects that Tamiflu does but dr's don't prescribe it as much because it's not as expensive. I did read the ing list of Tamiflu & it is pretty scarey especially if you have a lot of allergies as I do. thanks.

I had always taken the flu vaccine without a problem & after I got Dys my PCP thought it would be better to take the change on taking the vaccine than getting the flu. I asked him to give me 1/2 dose & wait & see how I reacted to it but he didn't think that would work. I let him give me the full dose of the vaccine & had very bad reaction. A few days after the vaccine I began getting sicker & weaker. I was so weak I had to prop my head up to eat & was that way for weeks. I don't think I ever fully recovered and will never take another flu vaccine.

Before I was diagnosed, & a few years after, I was that way a lot. I felt cold inside & out even in the heat of the summer in Tx. I would go to bed & have my DH put pillows on top of me trying to get warm. I have set in a car in the summer heat with the windows rolled up which would have killed a normal person but I did not get warm nor sweat. A doc prescribed Neurontin which helped a lot. It calmed my ANS I became able to sweat again & feel warm. I'm not on Neurontin anymore & I seem to have the opposite symptom now, I sweat & burn most of the time. Sometimes I still get cold & shakey especially if anxious or stressed. My body temp is avg 96?.

Have any of you used Tamiflu or any of the other antivirals? Everyone in my family that has taken them for flu was a lot sicker after taking it. Just wondering how it effects us with Dys. Thanks.

Thanks for replies. kayjay, What you are doing has worked well for me for several years. I can't imagine getting into bed & not having hair washed. I have covers over all pillows & mattress . Taking carpet out of the house & using unscented products has probably helped the most. Mold is one of the hardest things to deal with.

Hi Julie, I don't get out unless I have a dr's appointment. Church is out of the question for me now because of the noise & perfumes everyone wears. I don't really like people coming to my home unless they are fragrance free & I can't even get my family to leave that off so I can't expect others to. I spend my time trying to do basic household & cooking chores which takes me all day but I still never have the house clean enough that I want guests in. I don't have energy for hobbies now but I used to knit & crochet. I loved making afghans. I have gone from a social person to basically a recluse. I hate to admit it but I feel better when I'm alone because I don't have the stress of making small talk. You're still young so hopefully you will be better soon & get back to your life. Best wishes.

My PCP doesn't have a clue. I haven't had an allergist for years nor a neuro. I am not alone in thinking there are no dr's in my area that are worth going to. They don't know how to treat a patient that have symptoms that are not your norm.

I'm allergic to just about everything, meds, foods, pollen & wonder if Dys contributes to this? I don't react to pollens the way most people do with sneezing & runny nose. I react with everything burning. If my DH comes in the house without changing clothes after being outside where he's been in the Ragweed & grasses I immediately start burning in my nose, throat & mouth, sometimes my whole body feels on fire & it lasts for days. I find this very odd. DH doesn't always remember to leave his gardening clothes outside & I admit I get pretty upset sometimes when he makes me sick. Allergy meds do not help. Thanks.

I'm sorry I can't answer your question but my DIL has the same problem. She had every test run including upper & lower endoscopy, gall bladder checked, heart & I can't remember what else. When all was done they still couldn't find what was causing her pain, nausea, or gerd. She's tried everything she's read that might help & nothing has helped so far. Hope you find out what your problem is.