lifesaver

Things are going very well with the estrogen. Very thankful I am back on it.

It has helped my depression by leaps and bounds--one reason for going back on it. The hot flashes are gone. They made all my dysautonomic symptoms worse. Those are the two big reasons other than not having certain dainties atrophy and cause urinary problems. That too has improved and I won't need protection or surgery to fix things--nothing was broken. I just needed estrogen. The dysautonomia can cause bladder problems--one of the most embarrasing I can imagine other than having bowel control problems.

All I can say is that my body still needs it but at a lower dose.

Becky

Too much noise in an environment can actually trigger a panic attack for me. Otherwise I am very sensitive and aware of noises other people don't notice. The same with odors good and bad.

Since August I started having headaches that sound do much like yours. I also have trigeminal neuralgia and the docs seem to think they are related to that.

I am on Tegretol and that should help the headaches but doesn't seem to work at all. Went to the ER one time and got reglan, phenergan, and morphine--cut the pain to a 4/10.

I have a headache right now and just took pheneragan, vicoprofen, indocin, and xanax to help relax me. The doc did talk about putting me on baclofen. Will talk more about it when I see her Monday.

These are the worst headaches I ever had in my life, hitting a 10/10 with severe vomiting, dizziness, and pain behind my eyes and in the back of my head--surprised my brain has not exploded before this.

HUGS--it is so frustrating when nothing works--you want to scream and punch walls to try and relieve it. I hope your doctors can find an answer for you. No one should suffer like that.

Hopefully--

Becky

After a miserable 3 months, I saw a gynecologist and am now back on estrogen. I am 55, had a total abdominal hysterectomy 17 years ago.

I dreaded going off, but felt my GP knew best for me. The hot flashes kept me from sleeping and made the dysautonomia symptoms much worse when I got overheated. It made my depression worse and I felt worse than I usually do.

When the gyn examined me, he found an infection. My GP said I didn't need a pelvic exam, it was a waste of money. I wonder how long I have had the infection and how long it might have gone on if I hadn't gotten fed up with the hot flashes. Have a script for antibiotics for a week.

I am on the Vivelle patch which works much better than estrogen pills--and my bladder function is much better since going back on the Vivelle!!!!! The risk of stroke increases from 2/10,000 to 3-4/10,000 a very small increase. My stroke risk is very low so the risk may be non-existant.

I don't think I will go back to this gyn though. He didn't take any of the dysautonomia or other medical history very seriously--it seemed to me. He just gave me his canned speeches and told me to take a boat load of supplements other than the calcium/Vit D and magnesium. Next doc will be a gyn only--so they aren't running off to deliver babies. They didn't give me the script for the infection until this week, he forgot to talk to me about it when called to deliver a baby. I understand that--but also want my medical needs taken care of too.

I am rambling a bit--tegretol stupor tonight. I just wanted to share a bit of good news and some thoughts.

Hi! I am in Mt. Vernon, but that is a serious drive from Peoria. If you are ever in St. Louis, let me know. My doctors are there and I go often enough.

I would suggest you both find a psychologist/therapist to see to help you overcome this phobia. There is nothing shameful about it. It is an illness. And this phobia is endangering your health.

A bladder infection can become a kidney infection and make you extremely sick and put you in the hospital.

There is treatment that can help you overcome and manage your phobia---it is an illness, not a character flaw.

I can't get out of the bathtub by myself after a bath since the beginning of the year. My shoulders were injured and I ended up in physical therapy from my husband pulling on my arms to help me out---never ever let someone do that. I don't know why this problem started, but it must be something related to heat induced dysautonomia problems.

I have visions of my husband having to call 911 and the EMT's having to get my 55 year-old, wet, overweight body out of the tub whenever I am tempted to have a soak. No thanks. lol

Becky

I take remeron for depression---getting sick has made my depression worse. The doctor started me on 3.75mg and I am only taking 7.5mg due to gaining so much weight. I didn't need to gain weight when I started it and now have 20 extra pounds. I was on 15mg but my doctor reduced it to 7.5 since my tegretol was increased from 600-800mg a day. (I take that for trigeminal neuralgia). Tegretol works as a mood-stabilizer as well as treating the nerve pain. I hope this combo works.

I may try another anti-depressant when I see her next month. But the remeron sees to be ok and works reasonably well for me. It doesn't do much for the dysautonomia, as far as I can tell. Treating my depression is the biggest priority.

Becky

I am on the second day of wearing mine. Jobst, 20/30, thigh high, silicone non-slip top band, beige, open toe. Insurance covers 80% and I get 2 pairs a year.

The top silicone band stays up so well, I am a bit surprised. Thought I would be in the restroom adjusting them all the time.

I drove about 3 hours today and stood a bit in the bookstore. Right now I do not have the normal pain in my legs that happens when I am on my feet, etc. It is quite cold out now and I don't get as light-headed. I got very hot in the bookstore but didn't feel faint or too light-headed. I hope that means they will keep me off the floor in public places.

They are more comfortable than I thought and work well under my jeans. I am staying away from all-white hose. That is what they put on people in the nursing home. I did learn from the medical supply store that many people of all ages wear these hose which made me feel a lot better about wearing them myself. It takes a bit longer to get dressed in the morning.

Summer will be interesting, the heat is a huge factor in passing out, so I am a bit worried. I think loose skirts and the spray bottle trick might be my solution. And staying out of the heat is a given--if possible.

I had some facebook friends tell me how to put them on and encourage me to get them. They wear them all the time for other medical problems.

Will post as I get more experience wearing them.

Becky

A new symptom has appeared. I will be calling my neuro tomorrow.

My face will feel like the skin is burning. At first it only happened with severe headaches. It is starting this new behavior without the headache. Glad I don't have the headache with it, but it still stinks. There is an ache behind my eyes though and I hope it doesn't go full on into another monster headache. There is some mild edema in my face, but that has become a pretty normal occurrence.

My neuro appt is not until Dec 28 when she will have all my test results figured out and be able to tell me what the is going on with my body. I am not doing too well with the waiting part.

Becky

I have been pondering exercising everytime I button my one pair of jeans. There is a pool at a hospital, it is 20 bucks a month and the water is 90 degrees or so. If I get too hot, that is one situation when I pass out. Walking for too long a time--and I can't figure out what is too long--it varies so much, it also causes severe muscle weakness and collapse and/or syncope.

I want to exercise. I have trekking poles that really help with my balance, proprioceptive system problems. I was walking 3-8 miles a day in 2007.

I take meds that cause me to gain weight--which is becoming a health issue in my perspective even though the doctors have said nothing.

We can't afford any exercise equipment to use at home. I have mall walked a bit--but usually overdo it. For me, doing much of anything equals overdoing it.

I do have problems other than dysautonomia--my neuro thinks it is a symptom of a neurological disease. I used to be so flexible and stretched an hour or so a day. Now stretching causes pain in my legs, gentle stretching does not cause pain in normal muscles. I do use the stairs in my house--but just a few times up and down and my legs hurt and I am worn out.

I am just tired and feel like a blob.

dinet

being able to cook this year

my son visiting

finally finding doctors who give a Hoover Dam

and finally having hope again

My left eyelid droops. It is probably related to my Trigeminal Neuralgia--you DON'T want to have this disease at all. When I have facial pain, get edema, or get very tired it droops. My right eye does a bit, but there is nerve damage to the ocular portion of the trigeminal nerve on the left which causes the problem--I am guessing. I get twitches in the outside corner of each eye that are pretty intense and visual changes that come and go with no particular trigger. I have taped my eyelids up a few time--which always reminds me of Aristotle Onassis, who had MG. I go from needing glasses to drive to having 20/20 vision. Sounds like MS with the dysautonomia and sensory ataxia. But so far, no brain lesions.

Still waiting for my neuro to put all the pieces of my tests together and hopefully have some sound answers soon. I have photos of me when my face is swollen and eyes are drooping--people don't believe that is me the change is so significant.

In fact, my eyelids are severly drooping again tonight. Took a picture to document. Do I or don't I call the neuro? Having edema, facial pain and my balance has been way off. Wearing lidoderm patches on my legs and shoulders for the pain. Feel like a walking disaster.

Hopefully we will all get some type of answer soon.

I have the same problem and had ear tubes for a couple of years. They really helped. Probably need to see my ENT again after the neuro gets the cause of my dysautonomia figured out.

The fullness really throws my balance off. I have tinnitus, but it is permanent, tubes or no tubes.

It is really frustrating to live with the fullness--even Claritin and Nasacort do nothing to reduce it. Docs have been putting me on the meds for years and they don't help. In fact, the nasacort makes breathing over the nerves in my sinuses very painful and that triggers headaches and spikes in my trigeminal neuralgia pain--really horrific headaches.

Becky

That episode hit home in so many ways. I too had depression--well controlled--before I got sick. The pain and wanting to die sent me to the psych ward. I was afraid of driving off the road on the way home. That doctor had just told me it was anxiety causing my problems.

From January 2007 until July 2009 I got no definitive answers and was told by several doctors all this was in my head. I am still in the diagnostic process. Funny how it took just a few doctors who LISTENED to start the tests that the medical history indicate are necessary. The tilt table was positive. My history indicated I have Trigeminal Neuralgia. My MRI of my neck shows Degenerative Disc Disease, the NCV shows problems with the nerves in my left leg and a cranial nerve. My blood tests are all normal. Three psychiatrists told me none of this is in my head.

I am tired physically and emotionally. I am not lazy. I do what I can, as much as I can. I feel like a burden. I lost a job because of this and am not working. I literally cannot do the physical aspects, even of a desk job right now. I am 55. I want to work, it is a part of my life, my identity. Who would hire me in my current state of health? I don't want to die, but this is not living. How does one find meaning and feel useful to others when it is so hard just to get in the shower or walk any distance without having to recover for half a day or more?

It is more than horrible that so many of us have been through these experiences. I think it is the most damaging part of medicine. To be ill and be brushed off as an emotional or mentally ill person or as someone who is making it up. The Hippocratic Oath, first do no harm is violated by those doctors every time they do not listen and make invalid assumptions.

Becky

I don't have POTS, but have reactions after eating large meals and problems in the morning when I eat and take a shower/wash my hair--too much activity all at once.

The smaller meals suggestion is one of the best and make sure the foods are easy to digest, no fried or really heavy foods.

I have gotten very weak after a large meal and come close to passing out. If this is new to you, it could be something else, don't automatically assume everything is POTS.

Hope you feel better.

Becky

My neuro's nurse called this morning before I left for the hospital. She is ordering a prescription for compression stockings. Laughed and said it takes 2 people to put them on. And my husband is just soooo handy. They want me to try try OTC support hose first and see if it helps. She also ordered liver function tests to make sure the tegretol is not harming my liver--don't you love meds?

Spent the day at the hospital having tests. The EMG/NCV went well. There are problems with the nerves in my left leg and the ocular facial nerve--I think--in my face, part of the Trigeminal Neuralgia.

I would love to make the 4 neuros who said there is nothing wrong with me, eat the report from those tests--and have them apologise for the pain and suffering their lack of listening caused, to my face. Then they could give me my money back.

I had an MRI w/wo contrast of my brain-blood vessels, and cervical spine. Slept through that except for the IV insertion. Got very light-headed waiting for the scan. It was from having the EMG needle inserted and all the shocks for the NCV. Glad I knew it was the dysautonomia causing it, I asked to lie down and didn't feel guilty for it.

All the reports should get to my neuro in a week or so and will see what happens then. Hopefully she will see me sooner than the end of December.

Meanwhile, I hope my GP will put me back on estrogen. The hot flashes are killing me--I feel like passing out of need to sit down until they pass. Just can't regulated my body temperature when they hit.

I am profoundly tired. Going to bed and sleeping in till I am rested. Just so thankful to be getting answers. If my insurance had not changed, I would still be thinking this is all in my head.

I ramble--thanks for reading,

Becky

Glad things are working out. It is nice when hospitals listen. Hope they rip that doctor a new one. At YOUR AGE? My nerve damaged foot. What if it was that doc and their career was affected? Would be whistling a different tune.

So sorry that happened--hope you feel better soon.

Becky

I saw a neuro-ophthalmology exam back in July. It took 3 hours. Saw a resident, med student and the doctor. That is part of the reason it took so long. The other part is that it was an extremely thorough exam. I honestly can't remember everything they tested--I was in so much pain. The doctor did diagnose me with Trigeminal Neuralgia and put me on medication and then referred me to a neurologist for further testing and treatment. I had my eyes dilated. She was looking for neurological causes of my eye problems.

Sorry I can't remember more. But it is not painful, you are in a dark room for most of the visit. I hope all goes well and you get some answers!!

Becky

I have been diagnosed with it but am not currently on medication--used to take concerta 54mg and 10mg of ritalin at 4pm.

Becky

It sure can mrs B--no doubt about it. Once you see your GI doc and get the intestines under control you will start feeling better--doh.

Call the doctor who prescribes the Paxil and tell them what is happening and see if a dose increase would help until things settle down.

I am not sure I would have understood being this ill back when I was healthy. I hope I did try my best to understand--but sometimes it is just impossible to really grasp it all when you don't walk in another person's shoes.

I think I would hope that my friends and family would at least accept that I have limitations and that I don't make this stuff up and that it is real and not put their interpretation and expectations on me.

How is it that some people have compassion and understanding by the bucket and some people will always be clueless?

There will always people who have it worse than me and those who have it better--all I want is to be accepted and loved.

Becky

Tessie, did you check his bio? Many hospitals post them on their find a doc pages. Is he with a teaching hospital or larger metro hospital? Sometimes--but not always, this means you will get better care than a lone doc practicing in a small town who rarely sees any difficult cases.

It sounds like they are doing all the right tests and going in the right direction and not brushing off your concerns and symptoms.

If you are like me, you worry that all the tests will negative--not a bad thing, but it would leave you without a diagnosis and frustrated.

Personally, I say go for it and trust this doctor. After 3 years of trying to find doctors who gave a darn, I am very happy with my docs and finally getting answers. Tests I thought would be negative are giving us answers instead.

HUGS--it is tough going through all this--I have a bunch of tests on Monday, so know you have company in the diagnostic journey. Keeping you in my thoughts,

Becky

Thank you everyone for all the good thoughts and prayers.

I didn't have to go to the hospital. The nurse might have jumped the gun before talking to the doctor. I will remember the lysol, wipes and flip-flops--hospitals--shiver.

Tomorrow I have blood drawn--not sure what kind of blood tests till then. The neuro also added an MRI of my cervical spine to the brain MRA and EMG on Monday. I had one last October and a rhizotomy on the left c3-4-5-6 facet joints. But Dr R wants another since the tingling and pain are so much worse. Maybe those bulging discs are getting worse or the bone spurs bigger--I have radiculopathy and it has been gettng worse since 1999. Don't you love heredity? I am thankful to have a good doctor who is working on putting all the pieces together.

I am looking forward to Monday's tests--not the pain and noise, but to the hope of getting more answers. So far no hospital, but if it means getting better and getting the diagnosis finalized, I will take my pillow and blankie and do what needs to be done.

HUGS to you all--It is more than good to have support from people who understand,

Becky

Hi---gave in and called the neurologist. The pain and tingling in my legs keeps getting worse. I am not sleeping and have some chest pain and my balance/walking area getting worse. Having more trouble with dysautonomia symptoms as well. I am supposed to have the EMG and MRA on Monday, but could not deal with these symptoms for 4 more days.

The neuro's nurse asked if I had ever had IV prednisone before--nope. She is emailing my neuro--out of town or something. And said something about going to the hospital is a pretty intimidating thing.

Needless to say, I am terrified. I don't know what I am facing. The only bright side to this is that it might help with the diagnosis. I have been sick for most of the last 3 years with short breaks when I was less symptomatic.

I am exhausted, and so tired of being sick and not knowing what the disease is that is causing the dysautonomia and sensory ataxia. I had the tingling and leg pain earlier this year but it stopped for a few months. Might be the tegretol I take for Trigeminal Neuralgia.

So far they have ruled out MS--unless they find lesions in the future. There are other disorders that have DYS as a symptom along with my other symptoms. None are good news.

I am rambling--have my things ready for the suitcase just in case I have to go to the hospital. There was clean underwear in my drawer!!! Washing some other things

Asking for your healing thoughts and prayers,

Becky