lifesaver

Richland acres---I am so tired of hearing doctors blame the patient because they can't figure out what is wrong with us or they don't understand the disease we have.

I am sorry that happened to you. Sounds like you know your body and listen to it when it gives you signals.

I wonder why women are told things are in their head so much more than men? It aggravates me no end.

Becky

paige, what a horrible experience. I am so glad your doctors are looking into things and want to figure out what is happening.

you are in my thoughts and I hope you get answers very soon.

lifesaver--becky

I have tinnitus in my left ear. I think it is related to having 3 ear tubes in that ear and multiple infections and trigeminal neuralgia. It is always there but only bothers me a lot when I have pain episodes or get very light-headed.

Hard to put thoughts together--but I want to add something to this thread because taking a drug related to levaquin, called Avelox, caused a horrid drug interaction and all of my symptoms went into overdrive. This was before we knew what was wrong with me too.

If you are already very medication sensitive, please consider taking any drug in the fluoroquinolone class only if it is the only choice to treat a life-threatening infection. Taking these meds for sinus/ear infections can be a true form of overkill.

Levaquin is contraindicated if you are taking Cymbalta, an anti-depressant and probably any other antibiotic in its class by default. I was taking cymbalta, prilosec, zantac, and aleve when the ENT put me on Avelox for an ear infection. The fluoroquinolones are used for flesh-eating bacteria, severe pneumonia, peritonitis, and other very severe infections. They raise the blood levels of SSRI/SNRI's 6 times or more or more the therapeutic level--hence the reaction and risk of serotonin syndrome too.

I broke out in a rash with itching, all over my body, had leg and facial edema, and blistery rash in my throat and genitals. Even after going off the Avelox, I still cannot take Cymbalta, zoloft, or celexa--get the rash and itch. My psychiatrist will not let me try any other SSRI or SNRI because of the severity of the reaction and because I am so sensitized I get a rash and itch with them too. I cannot use cipro ear drops--it is a fluoroquinolone and I get the genital/throat blisters. I took Zantac later and ended up in the ER with breathing problems. We rechallenged all the meds that interacted with the avelox and still had severe reactions.

Luckily I can take Remeron for my depression and I was not sensitized to NSAIDs by it. But I am very cautious with all my meds now and read the information online very thoroughly before taking any new medication. I did end up in the psych hospital because I was not on any antidepressant after the reaction and my trigeminal neuralgia pain had become so intense. This is a side effect I don't wish on anyone.

As firewatcher said, these kind of reactions will not happen to everyone. Choose your medication carefully and stay alert for early warnings of problems. If there is an effective alternative antibiotic, seriously consider taking it instead.

lifesaver

I got syncope on beta blockers years back and had to change doctors in order to stop them. Don't know what my heart rate did, but my BP was 85/50 sitting down--who knows what happened when I stood up.

It could be the beta blocker causing the problem--I would ask the doc about that before taking the big step to a pacemaker.

HUGS, this has to be very upsetting,

lifesaver

Kind of like a fish flopping in my chest at irregular intervals.

I have a history of supraventricular tachycardia--way back in 1985 from mitral valve prolapse and the missed beats/extra beats, whatever was/is going on always felt oddly like my heart itself was flopping.

Do you get chest pain with your palpitations? They now happen at the same time for me, it seems. A Holter monitor would sort all this out and make sense of what I feel.

I notice more palpitations when I am lying down and wonder if it is related to the increase in blood pressure.

Eating sets off my palpitations also and makes me more light-headed and likely to have an episode of syncope if I try walking anywhere for any distancc. The old post-prandial thing is not fun.

We are not weird, it is a manifestation of our disorder. Unfortunately.

Taking magnesium is very interesting. I know taking it helps my leg pain and sometimes reduces my palpitations. Something to add to my list of dr. questions.

Thanks for posting this Mrs.B

I called back today--explained my problems communicating with the phone staff for the neuro/psych department. I got to talk with the nurse. She finally understood to get my file and get orders for the tests from my neurologist. I am clueless to what she thought the other 3 times.

I am getting orders for an EMG/NCV, MRA of my facial nerves looking for nerve compression by blood vessels, and a few other ones I don't really know about other than there are more on the list.

Saw my psychiatrist today. It was encouraging--my depression is better and I am stable. Between my resident and the attending, we talked a bit about my neuro problems. The attending asked if MS had been ruled out or if they thought I have it--seems all my signs and symptoms can be indicative of MS. No brain lesions. He said in a few months the docs should have me diagnosed. I also found out that the neuro who specializes in Dysautonomia is an excellent doctor--and in my opinion a very warm, caring man. (If you are in St. Louis, pm me for his name.)

It was a good visit. All the times other doctors told me this was in my head, even said I have somatization--3 psychiatrists have said absolutely not--those times have worn on me to the point I have wondered if I am making things up and don't know it. Who would want to lie about dysautonomia? Who could lie about it with the testing for it?

Needless to say I am now quite gun-shy with new doctors and even when I have to call about things going wrong with my body.

Thank you for all the input ajw and firewatcher--it helps to know others go through the same thing and that it is ok to keep calling. My bad experiences make it so hard to even want to call and I probably suffer through a lot of stuff that I should call about.

HUGS and thanks so much,

lifesaver

My neuro's office was supposed to call back today. I didn't think they would and they didn't disappoint. It is the office staff. I am calling back tomorrow and making sure she can spell my last name and has my phone number. Frustrating dealing with her.

I did call my cardiologist. I had an angiogram in April and everything was fine. We think it was a bad episode of Trigeminal Neuralgia. My heart is fine, I was told. However, I am having chest pain and tired of living with it and need someone to look at my variable blood pressure. I think my new type of headache just might be from blood pressure problems. They are so bad I throw up and have edema with them. Don't go to the ER because there is not much they can really do and it costs us an arm and a leg. My fear of passing out when out in public is keeping me pretty homebound and recovery from the headaches takes a few days before I feel semi-human again.

Hope that seeing my cardiologist doesn't upset my GP or Neuro but I am tired of having no treatment whatsoever for this and watching my life tick away. The cardio has my angio results and can monitor the mitral valve prolaspe as well. I can have the tilt table results sent to the cardio. Hoping this guy can treat dys but if not, he has the sense and grace to refer me to a doctor who can.

I am worn out and frustrated,

lifesaver

I am active on DINET on facebook--missed the activation through the fog. **** I hate this illness.

lifesaver

Hi, I signed up for the DINET group a few days ago. Know you all are busy but was wondering how long it might be before I am added to the facebook group?

Thanks

I am going to try taking my shower at bedtime and wash my hair in the sink. So good to know that feeling crappy after a shower is common to Dys. The bedtime shower is such a simple solution--kind of my V-8 moment, lol.

Cool, I am on facebook and joined the dysautonomia group and am going to join the dinet group. PM me and I will be glad to have people from here as my friends.

I also have Trigeminal Neuralgia and have made so many friends who also have this disease---sad we all have to meet this way, but now we have friends along the way.

I am middle-aged, play farmville and stay in touch with friends and family.

Thanks so much Gracie---St. Lukes doesn't take my health ins but sometimes dr's are at several hospitals and might practice at one that my ins takes. And maybe more St. Louis hosp will be on the list of approved providers soon.

Thanks so much!

After having to write an appeal letter to the insurance company---went because of chest pain and had an angiogram a few weeks later---but HAD to prove somehow, I needed to be there--well...

No, I do not call the doctor, but probably should for certain things. After the above experience I don't even call the insurance help line or the on-call doctor. They will most likely tell me to go to the ER but I know there is nothing the ER could help with.

This may kill me one day but at least my family won't be as broke as we are now.

Anytime I have called the doc or insurance nurse line they say--go to the hospital (part of this is covering their tails from being sued). When I go to the ER, I feel like an idiot because there is nothing much they can do that I don't do at home. (All of this was before my Dys dx.) Needless to say I don't jump up and go to the ER. At $125 a pop we can't afford it.

What do I do? I just tough it out. And take pain meds only if in dire pain--very hard to get a script for Vicoprofen--they worry about drug seeking.

I told my GP about my severe headaches and she said to call the on-call docs, that is what they are there for. I haven't called yet.

Sad that we have to accept pain and severe symptoms as something to just suck up and deal with.

lifesaver

Hi everyone--I have had Dysautonomia for the last 3 years but it was tentatively diagnosed in August and confirmed by a tilt table test this week. Figuring out what type of Dysautonomia I have will be the doctor's next step.

I am almost qualified for SSDI because of Fibromyalgia, Trigeminal Neuralgia, Sensory Ataxia, and Recurrent Depression. The Dysautonomia didn't even make it on that list. The cause of the Ataxia and maybe the Dys is thyroid disease with permanent nerve damage.

I really want to work again, but teaching high school is no longer an option. What I need right now are medications to relieve the cognitive problems. Writing a simple post like this is difficult. I lose my train of thought and can't find the words I need at times.

I scanned a lot of posts and see many of my symptoms and difficulties already under discussion. It will be very good to get to know everyone and support each other as we learn to live with this disease.

My medical team is based at a St. Louis at a medical school, about a one hour drive from my home in Illinois.

lifesaver