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Has pure autonomic failure been linked as a cause to "permanent depression" ( what I call permanent depression is when you can not get off of antidepressents without reverting to depression regardless your surrounding circumstances)? If paf is the result or results in the reduction of neurotransmitters (correct me if I am wrong about that please) then I would think the brain would not get enough to function properly. I have been diagnosed with pots but I really have not been tested for anything else. I do go to Vanderbilt end of next week so I'll get a full diagnosis there. I am off all antidepressent and pots meds in preparation and I am having a hard time writing this blasted question (this is my third attempt) so I'll just leave it as is. Sorry if it sounds vague .

Your feelings are probably the normal let down after a big event. I always get depressed Christmas evening but this of course is much bigger emotionally. I go to Vanderbilt in two weeks and I know that once it is over I will feel the same way you do. However, things have changed for you since you have been seen by some of the leading authorities on dysautonomia. You know you are really sick, you don't have to listen to every ignoramous dr. or layperson who tells you nothing is wrong. Even more important is that you don't have to listen to yourself when you tell yourself you are not trying hard enough or just wimping out, I do that to myself constantly. Since you have been a research patient you may be in a position to receive experimental drugs that just might work. It may be a ways off but the positive side of being diagnosed at a young age is you have time. Look into getting counseling on how to adjust to having a chronic illness. I know for a student this can be cost prohibitive but see if your school offers counseling or at least suggestions. The counseling should center around not blaming yourself for your condition and trying to work with it and learn when you are doing too much.

You guys are stealing my newest trick. I start coughing like from a gag reflex and throw up when I am sitting or standing too long. When I start getting this way I get immediate relief from lying flat on the floor. Coughing stops instantly. There is also something known as cough syncope. I haven't really researched it that much but it involves passing out while coughing. I don't know if it is autonomic related but it usually hits me bad after an infection. Sometimes it is not a good idea to drive due to loosing sight while coughing.

I had the pins and needles also. I had pots at least 10 years before the stinging started. When my pots got worse so that it began effecting everything I do that is when the pins and needles started. They went away after a 6 months and about 2 months of taking cymbalta. Iam now going off of cymbalta for a study and even though I do not have the pins and needles big time I do get a little taste of them. Once the cymbalta is completely out of my system it will be interesting to see if they come back full blast. A neurolgist did a test on me when I first started the symptoms and found nothing.

does anyone have night vision problems especially when driving? I can't add anything new to the fuzzy vision topic. I have it but I am also 49 and a lot of normal people my age have it.

I just went through 4 days and nights of that. I'd get maybe one or 2 hours of sleep. I finallyasked my doctor for some lunesta which has broken the cycle. For me it feels like I get an addrenalin wave through my body everynow and then when I'm trying to sleep. Sometimes when I move to the floor I can get relief. It is weird .

I had the same thing happen to me Christmas of 2003. The pacs started either Christmas Eve or the day before and Ihad several every minute. Christmas Day I started having them every 5 th beat and sometimes I would get doubles. 2 days later I had some nausea and an occurence of throat tightning so I went to the emergency room. They thought I might be having a heart attack so they admitted me for observation overnight and a echo stress test the next day. I did great on the stress test and the echocardiogram showed no problems so I was released. By the time of the stress test my heart felt tired and the pacs went away. I guess they wore themselves out as well as me. A heart catherization done last summer for a different reason showed no blockages at all. A few months after this even my pots got worse and I eventually had to leave work. The two are probably not related in the real world but in my mind I take the pac event as a sign that my autonomic system was getting ready to get worse. I have not had a similar pac attack since and have not had a doctor say the pacs are connected to my pots dive.

Thanks for the movies, I'll be there on Feb 20th. I am a little worried about passing the initial screening since I never have had a reaction to the breathing tests and the baroflex (sp?) test. I'll have to bring along my Cleveland Clinic hemodynamic results which said I had severe pooling. I think my problems are going to have something to do with my neurotransmitter levels so I hope they will be interested in me. Good luck and I am glad you got admitted especially after you went through your appointment getting postponed earlier.

I had this big time a little over a year ago. It finally went away after I was on cymbalta for a while, I do not know if cymbalta cured it or not. I am getting off all my meds for a study so I am curious to see if it comes back.

Were you scheduled as an outpatient or research inpatient? I go in Feb. as a research patient and am wondering if my appointment might get moved.

I tried accupuncture this past year and it did not help with pots. It helped me with my shoulders and several other things and I intend to start again in 2006 when the insurance will cover some of it. The accupuncturist who is also a chiropractor said the combination of the 2 treatments can correct the autonomic system but I was a weird case.

The shortness of breath was the first symptom I had that let me know I had something wrong. I use to get it only when doing extreme physical activity like firefighting ( I was a firefighter until this past year when I got too bad to work). If I tried to push through I got worse and it felt like a band was around my chest. Now I can get the same feeling of shortness of breath, not getting enough air and faintness just walking up the steps. I think it is pots related. The problem that I had was that all of the other pots symptoms (brain fog, fatigue) seemed normal to me since I was so use to them that I only complained to the doctors about the breathing. When nothing was found wrong with my lungs it was passed off as panic attacks. I know how you feel about seeing Doctors without insurance but when you can you need to have them check you out to make sure it is not another problem. In the meantime I find it helpful when short of breath to drop to my knees or even lie on my face until the breathing returns to normal. If you have an automated blood pressure cuff that you can use when you are having one of these attacks you will probably find your bp is dropping.

The good news is that it should not take you very long to hear from Vanderbilt. I believe Sunfish said she heard from them after a month and went the following month. I sent my application in around the beginning of November and heard from them last week. I am scheduled to go at the end of February. This was a lot quicker that some places that had a wait list of over a year. Good luck.

I was on adderall before I knew what I had was pots. I felt normal for the first time of my life. The negative side effects I had were only nervousness in the stomach, which was cured by switching to the time released version and appetite suppression which I did not consider to be all that bad a thing. My body eventually adjusted to the medicine and it's effectiveness became less and less so I got off of it. This was about 2 years ago. I restarted it a few months ago and thought I had found the cure but my body was still use to the drug and the effectiveness wears off in about 2 weeks for me. Raising the dose gives me another 2 weeks of relief. I would recommend your daughter taking it, she will probably not get immune to the effects as fast as I did. Just tell her to make sure she eats her meals whether she feels hungry or not. Also at first she may have trouble falling asleep but that does go away.

Thanks for the info.

How long was it from the time you sent in your application to the time you heard from Vanderbilt?

Unfortunately I am one of the few guys with pots. I guess I am in touch with my feminine side. I think one reason men are not diagnosed with pots that often is that so few doctors know about pots. I have been at least 10 years trying to get a diagnosis and usually was getting the panic attack, anxiety or nothing wrong diagnosis. Last year I got so bad I ended up leaving work and could not return. I was a firefighter and as of this Friday I will be retired. I will probably have to go to court for state disability retirement because I have one doctor who thinks it is ok to pass out in a fire. Fortunately I did find a good doctor who is trying to treat me and understands the condition. I do not know if I have other conditions that are causing pots, I went to Cleaveland clinic and they found that 44% of my blood pools but no reason why. So far the stockings, florinef and midodrine have not worked. I am limited as to what I can do workwise since any type of lifting seems to set off symptoms. My biggest wish is that I could get rid of the light headiness and brainfog.

I have just gotten over a 2 day sleepathon. I seem to run in cycles where all I can do is sleep and when I am awake I feel like I drank a bottle of benadryl (sp?).

I'm at the same point as you all. It is hard to realize that my life is changing because of this condition. I will be out of sick leave and vacation leave in August at which time I will will have been off work for a year. The doctor thinks he can still get me back to work after some cardiac rehab but I was in good shape when this mess started. The only difference now is that he has raised my bp with florinef. My work is going to terminate me if I do not return soon or at least have a firm date. It is also hard not to do the things at home that need to be done.

I am just a lowly firefighter and O2 has not helped me during my rides to the hospital in the gutbox but I can see how it can help someone with pots problems. When you think of it a lot of pots symptoms come as a result of not enough blood getting to our organs such as the brain. when we increase the amount of oxygen in our blood it means that what blood gets to our organs is able to do a better job oxygenating them thus making them function better. I felt better after my last tilt test when I passed out and got an iv. I had the crazy idea that if you take nitro to dialate the blood vessels and then added an iv solution to fill the veins it would help. That didn't fly because there was no research to back that up.

Did you get your ncs and pots diagnosis at Mayo? If so did they identify what is going on ie: blood pooling, or autonomic problems? I have not been to Mayo but I also have depression and pots and ncs. I know what a problem it is to get the doctors to look past the depression diagnosis and to get them to look at the physical problems. I suggest on your first meeting with the psych. you provide copies of your medical records that prove the diagnosis of pots and ask they be put in your records. I assume since you are on a company disabilty plan your records did a good job of substantiating pots.

My doctor told me it takes about a month for a dose of florinef to work. My first dose of .2mg did not do anything for me except for a few spikes in bp. Now I'm on .4mg and still only spikes in bp. So far no swelling of the hands or feet, maybe some in my face.

Gee, I never knew I had ovaries but if a doctor says that pots concerns the ovaries it must be true. My wife is going to be really surprised.

hi, I've been on florinef for a little over a month and so far do not have any side effects. Maybe some fluid in one of my ears, I can't tell if that is from allergies or the drug. My blood pressure goes up in spikes now and then but for the most part it has stayed the same and the drug has not helped. The doctor just increased my amount to .4 mg, his objective is to take me up to the point where I can not tolerate it then back off the dose and start midodrine.