Racer

Thanks for the advice Today I got my neurologist to switch my seizure med back to depakote. The last time I was on depakote, it had the side effect of greatly reducing my anxiety (and stopping my headaches), so if I have to be on a seizure med, I guess it is better to be on one that takes care of the most problems. I really dont get much help from my GP, so I guess it wouldnt hurt to ask him for help. I would be extremely uncomfortable seeing a psychiatrist or psychologist. Having asperger syndrome, I have been to plenty of them growing up. They will want to put me on antipsychotic meds. Risperdal is what they prescribe, and would have me sitting and drooling on myself unable to function. Not really looking for a drug induced lobotomy, or being forced to live in a group home. I am hoping to just try a med like zoloft or something, and avoid the whole talking about it to them part.

I have been known to fall asleep sitting up and slump over, but once I hit a certain point I end up falling to my side and using my knee as a pillow. I used to crave the pressure while trying to sleep. I would sleep with my arms and legs in all sorts of weird positions, usually hyperextended. Eventually as a adult joint pain started to set in, and now I try my best to avoid sleeping like that. I have a few techniques, first I try to never sit in bed. I have a chair beside the bed that I use for sitting, and the bed for lying only. Ofcourse I do prop myself up in bed, but never to the point of sitting. Another thing that helps is using a bunch of pillows! I use one for hugging, another for between or under legs, etc. This gives me some of that pressure, but without the damage. I also have a fleece blanket that I use to tightly wrap myself in. When I feel I need to go that extra mile I wrap myself up like a cocoon and sleep on my stomach. If I only knew the damage I was doing as a kid... I hope he can find ways to stop.

I was on a low dose of topamax for migraine. I then was started on the max does of keppra for actual seizures, and pain meds for headache. On 3000mg of keppra a day, with pain med, and zofran every six hours, I could hardly walk. I was then switched to a medium does of depakote dr (er version is for migraines, while dr version is now reserved for seizures). My neurologist did not want me on the depakote, so switched me to trileptal. Trileptal is indicated for epilepsy, and has not really helped me with headaches. My neurologist is supposed to let me know what he wants to do to treat my headaches.

I guess I could have chosen a better title for this thread. I guess I am asking what should I do, what have others done? I am so afraid that if I was to admit to being depressed nothing else would be taken serious. I just want to take the proper med for depression and really bad anxiety. I keep having panic attacks, I think I am on the verge of a mental breakdown

I notice many with issues like depression, bipolar, anxiety, etc. I wonder, the people getting help for these sort of things, does it affect the way doctors treat you? I know many of us are fighting to have doctors take us serious, and not write us off as having psych troubles. So how do you ask for help when having these sort of problems?

Are you sure it isn't a migraine? I had a never ending headache for years. It wasn't always very painful, it just never went away. My neurologist had started me on topamax, and the next day I was totally headache free and that lasted for months, until I had to stop the topamax. My current seizure med does not stop my headache, so I am just waiting to get a med that does. If you have frequent headaches, talk to your doctor and maybe ask about the seizure meds that are also used for migraine use.

NCS has such a broad range. It can include people who cant stand at all because of fainting. In that case, NCS is probably attributed to dysautonomia or some illness they are experiencing. On the other end of the spectrum are people who only experience occasional syncope at the sight of blood or something. For myself, ncs explains the type of faint, along with low orthostatic blood pressure, explains why I experience fainting. Increased fluids and midodrine help to raise my blood pressure to a more normal level, preventing most of my fainting.

It is located on my liver, and luckily has not grown so far. Even benign liver tumors can wreck havoc on the body, and if it is growing they will probably suggest I get it removed. Surgery to remove this would require removing part of the liver and would be a major surgery, requiring a long recovery. Needless to say if it is cancerous things will be much worse. Even a benign tumor would require testing every six months to check on it. In my case, even the best outcome seems scary. Anyway, as far as symptoms go, I am not really sure what is caused by the tumor and what is not. I was born with disabilities, but only developed worsening of dysautonomia symptoms in the past couple years. It could be the case that I was born with something that has caused or led to the dysautonomia or tumor, or I could just be very unlucky and have a unrelated tumor. My symptoms of the past couple years... Orthostatic hypotension and fainting, long qt intervals and arrhythmias. Cardio stuff is mostly controlled with increased fluids and midodrine. I have had seizures but seems to be controlled with medication. My brain mri was normal. I am going to possibly start a second seizure med for migraines. I am seeing a gastroenterologist for nausea/vomiting, weight lose, general abdominal pain, slow bowel motility and bowel blockages. I have tried linzess and amiteza for bowel motility, with no success. I am currently on a liquid diet. I have had a normal upper scope and normal gastric empty test. I have a colonoscopy scheduled for next week. I am waiting to see a urologist for bladder problems.

I really don't have much advice to give, just that I can relate to how scary the uncertainty is! I am currently in the process of trying to get a answer as to the type of tumor I have. So far I have had test results seen by five different doctors, and the doctors have showed uncertainty of the type. It sort of seems like a guessing game at times! Finding a competent doctor is key. I sure hope you can get in sooner, good luck!

I was negative for gastroparesis, and had a normal upper scope. I am being treated for bowel motility problems. I have noticed that the liquid diet goes threw much easier and helps with the pain some. Since starting liquid, I have tried eating solid food a couple times to test my body, and it was like a brick was trying to wind its way threw my gut, very painful!

Was it checked standing? No, it was checked lying on my back and left side. They did the test to compare my liver and gallbladder to other scans I had done. They were checking to see if my liver mass had grown any (it didnt!), and that my gallbladder was not becoming enlarged. I just finished reading the other thread on what is going on, WOW! I am having urinary problems, and will be seeing a urologist soon. I am certain I will be sent for more scans to check my kidneys. I will be sure to ask about the standing scan. I do get pain in my kidney area on my left side, and cant sleep on that side.

My right kidney was checked during a liver/gallbladder ultrasound and deemed okay, but oddly they didn't check my left kidney.

Many things can affect resting hr beside meds, so it is probably a bad idea to compare hr. A doctor would most likely consider your history while deciding if your resting hr is okay. Currently My normal resting is around 50-60, but with 5mg midodrine it goes into the 40's while sitting. During a recent stay in the hospital my hr went into the mid 30's while sleeping, and the nurses found it alarming. So for me, I only take the midodrine when I am going to be upright. It would probably be a bad idea if I took midodrine and went to sleep!

Thanks everyone for the tips I know that pain, I decided to try a few solids yesterday and it was so painful. This liquid diet seems to be working so far, it is the only thing that has been able to keep the pain and nausea manageable. At first they threw around the idea of having IBS, but it was determined that my symptoms are a bit to severe to leave it at that. None of the meds for this have worked. My bowel motility is next to nothing, and with solid food my bowel keeps becoming blocked, so I was told to try the diet until I have my colonoscopy. I am just hoping I dont need surgery and can avoid a feeding tube.

I just rest my arm extended out, palm facing up. For whatever reason my monitor gives me a error if I just let my arm hang. I have my monitor set to take three consecutive readings for accuracy. It is a pain and takes much longer, but cuts down on errors that could cause a faint.

I was told I should try to switch to a bland liquid diet until we figure out my GI issues!?! I was told I should try to stick with liquids, but could add some mashed or pureed food, but only stuff I know I wont vomit and that will digest easy. Any suggestions anyone? My mom has went and bought a stockpile of liquid foods, but I just cant imagine living on liquid diet! I looked up "pureed food" and many of the recipes looked very far from appetizing! I so badly want to dig into a Flintstones size rack of ribs

So I am not the only one! (btw you should have three dots, not four ) Have you tried anxiety med for your ocd? If not, then I highly suggest you talk to your doctor about trying a anxiety med. When I was on depakote (for seizure) it had the awesome side effect of drastically reducing my anxiety. My current seizure med does not help with anxiety, so I am going to see if I can switch back or get on something to control this, since the issue seems to be fairly severe for me at times.

In my opinion, Polar is the only way to go. You cant beat the accuracy and quality. I have been using heart rate monitors for over ten years, owned many different brands, and many Polar monitors. Most running stores or bike shops will have Polar monitors. If you get one with a strap, a cloth soft strap is the way to go. The soft straps are mostly fabric and are way more comfortable. If you own a smartphone, Polar also makes a bluetooth strap that links to your phone (no need for the watch).

Sitting and scooting would work, I just feel like I am giving up so much mobility. I spend most of my day in my bedroom on the second floor, and make several trips up and down stairs in a day. I just dont feel like I need to change, even that I know I must do something, if that makes sense? I will have to give the shower chair a try. Hopefully I can find something small and compact, easy to carry, since we have only a single bathroom, and my parents wouldn't want something like that sitting around. I tried to convince my parents to get a handheld shower (we had one before), but they do not like them. I have always had the thinking hotter the better, so I guess I could start by trying turning the water down.

Nope, no ocd here, I just enjoy odd numbers, even numbers are just weird

In recent months, I have had to many episodes of rolling down the stairs, probably not the best way to go down them. I am feeling it might be a good idea to modify the way I do some things. Luckily I seem to turn to rubber and bounce, having avoided serious injury so far. How does everyone go up and down stairs safely? How about ways to avoid fainting in the shower?

I have spent many hours looking over scans of brains on the internet to compare to my own ct and mri images. From what I know, a chiari might be considered when the cerebellum hangs 5+mm below the base of the skull ("herniated cerebellum"). From what I read, doctors are also looking for syringomyelia (cysts) in the spinal cord, and hydrocephalus (signs of abnormal csf) when they diagnose a chiari. Even if a person measures a 10mm, but does not have any signs that indicate abnormal csf (like a syrinx or something), it might not necessarily mean they will get a chiari malformation diagnosis. I measured my own cerebellum at around 5-8mm, and plan to ask my neurologist about it, but I am expecting it to be nothing since I don't seem to have any of the other signs that point to a chiari.

I dont know, maybe the tests are correct and the nausea is something neurological, I see the neurologist in a week. I was thinking delayed emptying because it seems to fit in with the IBS-C, possible liver mass/gallbladder complications and the rest of the GI stuff. The next test the doctor wants to do is a colonoscopy. I just know that I have been in constant pain, nausea/vomiting for over a month and none of the medications have worked. I initially got a little relief from zofran and linzess, but they stopped working. I have lost 20lbs and currently experiencing intense palpitations, chest pain, a full body ache, intense fatigue, that I am certain is caused by malnutrition. I am beyond desperate for relief, yet doctors dont seem very concerned. The hospital just takes my sitting BP, does a ekg, sometimes I get fluids and then I am sent home. I am at the point of willing to try just about anything

I really thought my gastric empty test would show delayed emptying, since it seems like it is the problem I am experiencing. Of course the results were 9% retention at 4 hours, within the normal range. According to my doctor this test (among others) rules out any GI cause for my nausea/vomiting and that I should talk to my neurologist. I really question the accuracy of this test. I was only given the egg (no toast or anything), and the lady said she placed all the material in the first bite, so I only had to eat that bite if I wanted. They kept switching me to different machines to scan me, and different techs seemed to do each scan a bit different. Then to add to it all, the report says I was scanned every 15min for the first two hours, when really I was only scanned 5 times over four hours. They said they monitored my activity between scans, when really that was not the case as I went for walks between scans The doctors opinion... non of that is important, only the empty times, and my times are normal, UGH!!! I would be okay if the test is normal, but how accurate is the test to begin with, let alone a botched one

It seems that many people live a full life without much progression, while others quickly progress. I guess it depends on the issues and possible complications faced. I have had less serious issues for many years, but was able to stay 100% fully functional. Then one day I fainted, and that landed me in the hospital. The tests showed numerous issues, but once I got on proper medication I became mostly functional again. From that hospital stay, things slowly progressed, but I managed to stay functional. Then I recently had a episode with a seizure that landed me in the hospital in bad shape. I lost a lot of function that I dont think is easily regained. I am trying to go back to work after a month off, but I cant get much done and this seems to be quickly coming to a end. The two times I had stays in the hospital, I left in drastically worse shape then I was before. First I developed mostly cardiac and neuro issues. My biggest issue being fainting. Then this recent stay, I had a worsening of my previous issues, and much worsening of GI and neuro issues. Currently I am really struggling with controlling pain, the GI problems, trying to avoid a feeding tube. I was born with disabilities, and as a kid I always thought I had it so rough. Now looking back, those were just bumps in the road. I am really hopeful that with some treatment I can at least continue working.