ajw4790

Hi, I have an essential tremor (hands), and also get an orthostatic tremor quite frequently. This is normally in the legs. I also will get the random facsiculations (twitches) that you mention. I was told the ones I get in my abdomen are likely do to nerve "damage" after my appendectomy. I also with pretty much any of my muscles get a tremor with any sort of prolonged muscle contraction, like exercising, trying to hold something/pick up something that is heavy, or like you said keep my mouth open wide for long periods of time at the dentist. They do not understand and are always telling me to open wider etc. but it is very easily fatigued. For that TMJ disorder is also a part of the problem for me- I have no discs left in both TMJ joints and I am only 25. I don't know if that helps?

Hi, I have gone to Cleveland Clinic once to see a neurologist at the ANS clinic. I am going back next week for more testing. If you are coming from further away I think they can work to schedule tests while you are in town. The dr. didn't have my records until I gave them to him on the day of my appointment which led to a delay in him knowing what tests I needed. After testing I was told I can continue to see him semi-regularly or he will communicate with my neurologists here as far as treatment. He does work with may patients with dysautonomia. For the people who go to Cleveland Clinic and do not get much in the way in follow up care, I think it is because they live too far away or possibly that they are dealing with cardiology and not neurology. Which department are you going to? I think either is a good option, it all depends on where you are diagnosis symptom wise, and what that particular doctor specializes in or routinely works with. For many of it it take multiple drs to sift through all of this, so multiple appointments may end up being a good thing, or it can lead to too many cooks in the kitchen- it all depends.

Hi, I wonder if it is part of the neuropathy if you have peripheral neuropathy. Or radiculopathy from a compressed nerve along the spine. But, for those who have it in multiple areas/all over, I am not sure this would make any sense. And it isn't a Raynauds type reaction? I don't think I have had it, so I am not really sure, just speculating....

Hi, The theory sounds plausible, but I am not up on all the DI/MCAD etc. information. Interesting though! I might have to stew on it a while... Jump, You said something about laying horizontal, and I just wanted to make sure that you have tried raising the head of your bed the 4-6 inches (or 6-8 inches-whatever it is). Because the purpose behind tilting the head of the bed is to retain that fluid and not create so much urine at night. Also, do you try and drink the least amount possible before bed? Also, with so many trips at night I was also wondering if you have looked into a neurogenic bladder type of an issue (not emptying fully). I know with many of us these are just unexplainable occurances and do not change with any lifestyle changes etc, but I just wanted to see if you had tried these things.

Hi, Was the blood test positive or abnormal? I have had EEG's but none abnormal (in recent years). I had epilepsy as a child so I did have abnormal epileptic EEG's as a child. I don't think there is a link between that blood test and an abnormal EEG, but I am not sure. So, they didn't feel it was seizures, narcolepsy, or another sleep disorder etc?

Hi, My headaches are all mainly under the migraine umbrella. I also get aura symptoms- with or without the migraine pain. I guess every once and a while I will get a headache with no aura, photophobia, sonophobia, and whatever the -phobia is for smell (it isn't coming to me right now). Today I had a bit of a migraine- weather, medication, and cold related. Besides the pain I noticed some visual aura symptoms and was very sensitive to smell. For some of what you originally described you may want to search the board for coat hanger pain and the headaches that it can cause.

Hi, Can you get any type of air/inflatable mattress? Those are often about the only "comfortable" form of hospital bed I have heard of. They help to alleviate from putting all of your body's pressure on a few bony points of your body. It would also probably help to form a small bit of "muscle pump" or blood flow back to the rest of your body as the air moves around. I will have to look later at some of my notes to see what other tidbits I may have. But, characteristicly hospital beds are not very comfortable and are not meant to be in for extended lengths of time. I wonder if it would be worth looking at websites/forums for people with conditions that make them stay in their beds all the time (bedridden) or for a long recovery etc. and see what they prefer? Is there anywhere to try some of them out? I hope you can find something comfortable to work for you!

dsdmom, My response to hot drinks/soup is from it causing an internal heat intolerace type reaction in the viscera, much like many of us get from too much heat in the environment. It causes the blood vessels to dilate in the gut and for blood to pool. It causes a stomach upset, nausea, overheated, shaky overactive ANS type reaction in me. Cymbalta has seemed to lessen this. See my previous thread from a while ago and others replies. http://dinet.ipbhost.com/index.php?showtop...;hl=hot+liquids

Hi, See my recent post below. It discusses some about this. But, what I am talking about is more of a severe muscle fatigue type pain. So, I am not sure that it is the same. I would not completely rule out that what you experience isn't due to POTS. I was under the impression that is a relatively common symptom. http://dinet.ipbhost.com/index.php?showtopic=11480

Hi, You have to make sure to drink plenty of water (no caffeine or other diuretics). And consume plently of salt to hold on to the water. The salt has to be in your body in excess at the same time that you are drinking more fluids for the salt and water loading to work right. If you are sweating it all out, then maybe discussing with your doctor about the excessive sweating and a way to curb that, so that you retain more salt and water. Also, work to make sure that all of your other electrolytes are balanced.

Hi, I take it daily and not on an as needed basis. I think most people take it daily, but some on an as needed basis. Some take a slightly bigger dose when symptoms act up according to drs directions. It is important to follow the drs. directions. I don't think that for many/most people this is an easy med to take as needed, because your body has to have a chance to get used to it an adjust. If you do not take it on a daily basis it has a hard time doing this. I think that the jittery/anxious feeling is typical for when stopping meds such as BB, especially cold turkey or rapidly decreasing doses. Ask your dr. what you should do.

Rachel, Hi! My experience may have been a little different in that I had to wean completely off of Wellbutrin and lower my Zoloft dose to start Cymbalta over the time span of 3-4 weeks and then began the Cymbalta. I would say I saw some minimal positive affects early on. I had a lot of bad headaches the first month or so that went away. Then after things leveled off I saw more of the positive affects. So, it took me a little while. It still hasn't been incredibly beneficial to me, but there are some days were I have spurts of more energy and alertness than I do without it. My HR seems to be up, but more consistant (if that makes sense), BP is good... a little on the high side for me. And the biggest result I noticed since taking Cymbalta is being able to drink warm/hot liquids and soups again, which I hadn't been able to without a lot of side effects for years. But, I would say give it 3-4 weeks or less the side effects are too bad. If it is the headaches, ride those out if you can, because those did get better for me. I had them daily like clockwork, and then they were gone! (and I did not miss them!)

Hi, I am glad that you were able to find someone that knows what they are talking about that was willing to work with you to give you useful advice. Sounds great! Did he have any other tidbits of information?

Melissa, Hope you feel better and are able to escape soon!

Hi, What other tests have you had done? Especially those done more recently?

Here is a link to the story on ABC News. The found that the Vitamin D Tests they had been performing were inaccurate. http://abcnews.go.com/Health/Diet/wireStory?id=6597882

I guess thats why the email doesn't work....

Hi, I have an appmt coming up to see a specialist (requires an overnight trip) so won't see them very often. Anyways, I am trying to collect my thoughts and questions. I have asked some before, but does anyone else have patchy (non-glove and stocking) neuropathy? As in hairloss on legs/arms not in a distal to proximal loss pattern, but have some on ankle and on front of calf and none on back of calf and knee and much of thigh. It does not follow dermatome patterns either. So, far no dr has figured it out... Which reminds me... I did see a Mystery Diagnosis where the young teenager was diagnosed with neurocardiogenic syncope etc. and had a lot of similar symptoms... slept a LOT etc. and did have the patchy hairloss and finally they figured out it was a problem with her pituitary. So, another thing to check into.... Also, on that one a girl with a headche that would not go away- due to a build up of pressure in the spinal canal. Also, saw another Mystery diagnosis recently that seemed semi-familiar was one on angioedema, she had a lot of severe gastro symptoms. Also, the other lady had an inner ear thing that made it seem like she was always on a boat- things rocked around her. They have had one on Chiari/EDS, anyone see that? Was it any good? Also, was one on Prinzmetal's Angina. Anyways, anyone else have the patchy hairloss/neuropathy???? Thanks!!!

Hi! Thanks for your responses! I still haven't quite figured it out, or have I had much time/energy to do so. But, I will have to try some of your ideas.

Thanks for the suggestions and thoughts! As far as the gum etc. I have been to a smaller Whole Foods, but have yet to make it to the larger one to see what they have. As far as the Xylitol and other sugar alcohols, I find it interesting and need to look at it more, but I do believe that they have made me sick in the past (gastro symptoms). As far as other products: mkoven brought up Nunn before. I also wanted to add a few I have found (some I still haven't tried as much as I would like to have, but haven't gotten around to it) Vitamin Water (no sodium) Smart Water (electrolyte water no sodium) Coconut water Whole Foods brand fitness water/electrolyte water/vitamin water Sobe Life Water (has sodium) Snapple Vitamin Water (no sodium) (Propel, Aquafina waters etc all have artificial sweeteners) 24C Jones Soda Company version of vitamin water and comes in packet form Has anyone tried and liked....? Zym tablets: http://www.gozym.com/flavors.html Zenergize tablets Enlyten Sports strips- melt on your tongue form of electrolyte replacement (but still have to drink water!) http://www.enlyten.com/ Ultima Electrolyte drink I am most interested in the Zym tablets and the Enlyten strips. Still trying to find more in the way of gum and other products that always have artificial sweeteners in them. For more info on some of these products/topics you can also check out- http://www.associatedcontent.com/article/1...hout.html?cat=7 http://www.associatedcontent.com/article/1...rts.html?cat=22 You can also find my dysautonomia articles there.

No, it isn't blood pooling. It is in my arms mainly, and it is like a painful intense fatigue. Also, to go along with this... I am pretty sure I have heard others say that they to have days where they just can not stay upright, it is as if gravity is continously pulling at you and the only way for that nagging feeling to go away is to lay down. Does anyone sometimes have this to the extent that the pulling or tugging of gravity feeling is so intense that you have to not only lay down, but lay on the floor as flat as possible. If you are on the 2nd floor you would have the urge to go downstairs. You even feel like if you could digging a hole in the ground to get even further down would help to ease that nagging gravity force nipping at you. I know it sounds weird and I probably am describing it weird, but do others have this? What is normally acting up? I am not sure for myself. I normally feel so downright awful at these times and I come close to crying which I do not often do with my symptoms, but with this there is just that nagging force nipping at you that you can't do anything about that overcomes you. Or is all this just me?

Hi, How/where did you find this? I have never seen/heard of it before, and I have had many OSU drs. and have looked at a lot of information from there. Is there any other info than the one page? I am interested and may have to check it out, because I have never heard about it until now. But, as an FYI I have already outgrown all the drs. for this region, so I am not sure how beneficial this will be... Thanks!!!

Hi, I know it is a somewhat common occurance with many of us, but was wondering what the dysautonomia specialists say is the cause and how to prevent or get rid of the heavy painful fatigue feeling, that occurs mainly in arms and legs? I understand the basics behind it, muscle fatigue etc.... But, what do the specialist say about this phenomenon and how to deal with it? Because with us I think it is like our response to many things, in that it is not necessarily a normal response. The heavy feeling I am referring to is like you go to brush your hair and your arm feels like it weighs a hundred pounds and it takes every bit of energy to move it. It also can be very painful at the same time. Normally when this occurs I also have an overall sense of fatigue, but not always. The other day, I felt okay for me, and went to put my hair up and bam it hit me. My arms could hardly move and they were very painful. What are we supposed to do about this? Thanks!!!

Hi jjb, I looked at the P... Syndrome that you mentioned. It was very interesting. Thanks for posting! It sounds an awful lot like what my sister had when she was a teenager. I had epilepsy as a child and I think that it could fit the description of mine as well. I will have to look into it more... Does this diagnosis change things? Especially if you have "grown out of it"? Thanks!

Hi, I take it with a BB, not sure about Mestinon. Grubb's NP Bev was the one that put me on it, so I am sure they would be willing to discuss it with you. I am on the lowest dose and it is in a do not break open type capsule, so as far as weaning about all you can do is take it every other day I think.