Poohbear

I've been having problems for nearly a week now, this has happened before and I've never gotten any Dr to figure it out or what to do to get some relief. It usually starts with a feeling in my throat. I'm assuming it's a muscle spasm because I can sometimes get in a position where I'm comfortable but then if I move It seems to get my gag reflect going. At first, it seemed that maybe it was a digestive problem because my esophagus didn't feel right either...slight burning, my tummy was bloated and seemed like everything was just sitting. I backed off of eating and even though I'm no longer bloated this isn't going away. I do notice that when I first wake up I will feel better and when I sit up and start moving around it comes back on me. Seems that when I type or read or keep my head down it gets worse. Once it gets going again though, sometimes if I lay down to try to get relief it does feel like I may have some slight burning sensation (I can't tell if this is heartburn or not). Once I get comfortable again though I feel better lying down (generally speaking). I can't really tolerate meds so that's not an option. Any ideas on how to figure out if this is muscle vs. digestive and/or how to figure out which muscles are the trigger? I do know any exercise I've done on my arms will make this worse or if I get it calmed down thinking it's gone exercise on my arms will make it come right back. Have any of you had something like this?

Nina, Wishing you the best as you start your new routine! I can relate very well to your post. When I was working it was such a horrible effort to get up every morning (because I don't get restorative sleep) and then eventually I would get "awake" and manage throughout the day but many days I would get home around 4:30 and I would totally crash. I was driving all over the state of GA and between leaving very early in the morning and often not having time to eat anything until I got home I would have "nothing left out of my body" I would fall asleep and usually wake up around 7-7:30 and I would eat dinner (sometimes I was so exhausted I couldn't get up until around 9 or so) and then I would fall back asleep for the night. Anyhow, I admire what you are able to do and acknowledge how difficult it is. I bet you're right about the impact of your hormones on all of this too. If you can, try to plan for the weekend just for you...one day to sleep if you need to and one day to refresh your spirit with something you love to do I'm sending a hug and positive energy your way!!

I'm pasting the below in case you have not seen it yet and find it of any interest to you.... Artificial gravity: a possible countermeasure for post-flight orthostatic intolerance. Moore ST, Diedrich A, Biaggioni I, Kaufmann H, Raphan T, Cohen B. Department of Neurology, Mount Sinai School of Medicine, New York, NY 10029, USA. steven.moore@mssm.edu Four payload crewmembers were exposed to sustained linear acceleration in a centrifuge during the Neurolab (STS-90) flight. In contrast to previous studies, otolith-ocular reflexes were preserved during and after flight. This raised the possibility that artificial gravity may have acted as a countermeasure to the deconditioning of otolith-ocular reflexes. None of the astronauts who were centrifuged had orthostatic intolerance when tested with head-up passive tilt after flight. Thus, centrifugation may also have helped maintain post-flight hemodynamic responses to orthostasis by preserving the gain of the otolith-sympathetic reflex. A comparison with two fellow Neurolab orbiter crewmembers not exposed to artificial gravity provided some support for this hypothesis. One of the two had hemodynamic changes in response to post-flight tilt similar to orthostatically intolerant subjects from previous missions. More data is necessary to evaluate this hypothesis, but if it were proven correct, in-flight short-radius centrifugation may help counteract orthostatic intolerance after space flight. c2005 Elsevier Ltd. All rights reserved. PMID: 15835033 [PubMed - indexed for MEDLINE]

I don't really have much advice. I agree that checking into disability services might be good. Since you don't have control over who your roommates are can you make a plan B for what you will do if it doesn't work out for you? Can you afford to move out on your own or maybe find another roommate on campus? Are you connected or affiliated with any church or group? Maybe there would be someone from a place like that that would be willing to donate their time to help get you to classes if you needed it. Good luck. I can imagine the anticipation you are feeling

Hi Julie! Fatigue is one of my worse problems. I just have no energy sometimes and I can do a task (like take a shower) and I can't help but fall asleep. Some days I keep trying to wake up and every time I lay down I fall asleep. Other days I just dont have much stamina and feel tired and lifeless much of the time. I also get frustrated with myself because when I'm tired and fatigued I get INCREDIBLY grumpy and I feel like I take it out on people sometimes.

Hi Tracy! I was just wondering if I understood your post right.....that the Dr. is putting you on Florinef prior to your period? Did they tell you what they expected the medication to do for you? I'm a little confused about that one because most of us (although certainly not all of us) tend to retain fluid and salt pre-menstrually anyway. So the Florinef would make you retain more which may or may not make you feel better but I don't understand how they correlate that to the leg pain. As for your chest pain and the sinking feeling; I can relate but I've not found any good answers for myself on that one. Sometimes, in my case, it seems like there is a deep muscle spasm somewhere in my esophagus or lung area. A friend of mine is a massage therapist and she told me that ice is best for involuntary muscles so sometimes I will put a bag of ice on my chest or back and I sometimes get some relief. Maybe it's something you could try? It wouldn't hurt you but it might help. Hope you're feeling better with each day.

Hi Welcome to the board!! I just wanted to say I had been on a bb for many years before I started passing out. It really stumped all the Dr's. After a tilt table test confirmed a problem they increased my bb dose and added florinef and that worked really well for a while. I do want to caution you though that while a tilt table test is helpful it does not give a definitive answer to diagnosis. There are many false positives and negatives on the tile table. Another problem with the tilt table test is there is no standard procedure so different Dr's, clinic and hospitals do the test different and that's not such a good thing because you don't always know if you are getting the procedure performed correctly therefor, a correct outcome. It is a good test and I'm not discouraging it at all....just want you to know it's not necessarily definitive by itself. From what you wrote, you sound a lot like me so I can relate to what you are going through and how lousy you feel. Good luck with testing. There's a lot of great support on this site and a lot of information so happy reading!

Sorry I wasn't around to chime in earlier. I do have a pacemaker (implanted after meds failed and my body rejected florinef); I am one of the few that has actually had SOME benefit to pacemaker but this is only because my case in the beginning clearly documented that a significant number of my syncope spells were a result of my heart rate crashing. I still have horrible tachycardia though and pm does nothing for that. One thing I could suggest to you that is helping me (but admittedly it was difficult finding a Dr to even come up with this)....I was unable to tolerate typical adult doses of beta blocker. When I was in the hospital they decided to try me on Metroprolol. I started out taking 1cc (which was 1 mg per ml) every 4 hours. Metroprolol is a short acting bb so I don't have as much bradycardia with it. I am now taking 2 cc's every 6-8 hours. This is a TINY dose. It's a liquid form that has to be made by a compounding pharmacy (it's costing about $35 a bottle). This is like a dose they would give an infant if they needed. It is actually helping me some without giving me all the side effects or dropping my heart rate too low. I will be happy to give you more detailed info on the exact dosage if you and your Dr are interested in trying it.

Morgan, I'm wiped out and not thinking too clearly but I just had to reply before I head to bed. I too hope you will continue to post....in good times or in bad times. We want to support you through this and you need us just as much as we need you. I too have had the experience of bp spiking high, passing out and then not being able to respond yet understanding everything going on around me. It is frightening and frustrating!! I also have drops in potassium that nobody has been able to figure out. Yet, I'm also very sensitive to the potassium pills so when my body is low on it I have to be very careful about how I get my levels back up. I read in a medical article about a year ago that our bodies use more potassium during times of stress (by stress I don't necessarily mean "mental stress" it could be mental or physical). I notice my levels tend to drop a week before my cycle starts, anytime I'm fighting a cold/flu, if my activity level suddenly increases. What's worked for me is I added drinking a glass of Juicy Juice every morning (it has lots of potassium, no preservative, not high in acid like OJ is). Then, because I am allergic to bananas I would try to eat a baked sweet potato (White potato works too but has less K than sweet potato), broccoli or something else high in potassium. I still have occasional K drops even doing this for which I take Klor-con for. I am not on Florinef and have no other "typical" cause for losing K and nobody has figured it out. I can imagine how frustrated you are. I do hope you will be feeling better soon and will get some answers. Do what's best for you but I just want you to know that just because you feel worse or feel more down doesn't mean we don't want to hear from you. We're here through the good and the bad!! Okay Hugs and hope tomorrow will be a better day for you

This is just my experience and my opinion. If I were in your shoes I would do as much research as I could on my own on SS website. I would go ahead and fill out the paperwork myself being very detailed about everything. ONLY if I was denied the first time would I then hire an attorney. Although maybe you could hire one for a consultation fee to ask questions about what direction you could take and how to protect your assets. I say this because you have so many facts provided to you via SS website. So you know what they are looking for and what their criteria is. Since many attorneys won't even take the case until you've been denied why try hiring them. The way I view it is, no matter what, it's a lengthy, timely process. I would rather try to win it on my own the first time and try to keep any money I "earn" coming to ME and not ANY of it to an Attorney. Especially since your benefit amount won't be much because you won't have a lot of credits...try to keep an attorney from getting it because you will need it. This is just my opinion and from my own experience but attempt it first on your own, if you get denied, contact your local congressman's office and ask to speak to someone in constituent services and tell them you applied and got denied and want their assistance. They can then direct you and they are free and many times influential (though they will say they are not but trust me...they are) with the local social security office.

Oh Mary, my heart goes out to you and your family! I am so sorry for your loss and heartache right now. I wish I had "the right words" to offer but please know we are here for you. I totally understand what it's like when life gets crazy and you are so worn out---you want/need the support of those on this board and yet sometimes your personal life is so chaotic and exhausting you can't even reach out or keep us posted. Things will get better and the load you are carrying will get lighter. Meanwhile, let us help you through it! Hugs being sent your way

Good luck with the new Dr. Keep in mind, if he does tell you you are crazy then that's your sign to find a different Dr. I know it's frustrating and scary but try not to take it personally....Dr's who tell people they are crazy, don't listen and don't help their patients have problems of their own. I have pain issues (I have Fibromyalgia) but I am not able to tolerate many meds at all so I really can't help you in that area. Honestly, the thing that has been the most effective for me with the Fibro is mild, gentle stretching and isometric exercises. I mostly just wanted to offer my support. Let us know how the Dr appt goes.

Welcome Gwendolyn! Sounds like you've had an ordeal but it's good you are getting the help you need and they diagnosed you so quickly!! Thanks for sharing your story.

See below: Beta blockers work by blocking many of the effects of adrenaline in your body, particularly its stimulating effect on your heart. The result is that your heart beats more slowly and less forcefully while the blocker is active in your body. A common side effect is lethargy and a feeling of fatigue. Certain classes of the beta-blocking drugs also may decrease the blood level of HDL, or good cholesterol. Calcium channel blockers interrupt the normal flow of calcium into the heart through cell membranes. This dilates the coronary and other arteries and increases blood flow to the heart. It also diminishes the heart's demand for oxygen by decreasing blood pressure, heart rate and the vigor of heart muscle contraction. Side effects may include lowering of blood pressure or heart rate beyond what is medically needed. Both medications lower the blood pressure. It is important to monitor your blood pressure and show your physician what your blood pressure is when you are not in the office. Also, report any side effects to your doctor. Sometimes it is necessary to change medications a couple of times until the right one is found for you. I agree with Nina though...we are all different and different drugs work or don't work for different people so it's worth trying both if your Dr. agrees to see which is best for you.

Tim, I don't have any advice or input on the triglycerides issue. I hope you are able to get some answers about it. I did want to say its great news that you are able to work like you are!! Is there any particular medication, therapy or combination that works for you in dealing with your POTS?

I'm so excited for you and happy to hear the heating/cooling issues are fixed!! Congratulations. Have fun but also work to find the balance between classes, fun and your health. You go girl!!!!!

These are lovely! Thanks for sharing this hobby with us!!

Check out these sites: http://www.socialsecurity.gov/dibplan/dqualify4.htm http://www.socialsecurity.gov/dibplan/dqualify5.htm http://www.socialsecurity.gov/dibplan/dqualify6.htm http://www.socialsecurity.gov/disability/p...impairments.htm http://www.socialsecurity.gov/disability/p...ultListings.htm http://www.socialsecurity.gov/disability/p...t%20arrhythmias http://best.ssa.gov/ NOTE: UNDER SOCIAL SECURITY-CARDIAC ARRYTHMIAS THIS IS WHAT I THINK MANY OF US COULD POSSIBLY QUALIFY UNDER--- 4.05 Recurrent arrhythmias, not related to reversible causes such as electrolyte abnormalities or digitalis glycoside or antiarrhythmic drug toxicity, resulting in uncontrolled repeated episodes of cardiac syncope or near syncope and arrhythmia despite prescribed treatment (see 4.00A if there is no prescribed treatment), documented by resting or ambulatory (Holter) electrocardiography coincident with the occurrence of syncope or near syncope. Hope I'm not overwhelming you---just trying to help.

Here are the recommendations I have for you: #1 Don't do the application online because there isn't as much room to write things (there is a limit of words on each question if you go online). #2 Contact all of your Dr's offices and try to get the records yourself. If you offer to pick them up sometimes they won't charge you. If you can afford it, it's worth you paying for them just to ensure SS gets ALL of them and you have more control over timing. I called and faxed (I did both so I had documentation--I addressed all faxes to "Medical Records Dept) and I told the Dr's offices I was needing a COMPLETE copy of my medical file and gave them about a two week time frame to get it all done in and then I picked them up. (Some offices had me sign for them). You still have to give SS permission to obtain them as well but it will take them a lot longer to get it done than if you do it (most likely anyway) #3 Be as complete and detailed as possible on the SS application. It is a draining process but you've got to do to even have a chance of being approved. If you have troulbe sitting, walking etc ....list EVERYTHING you have trouble doing and if you get depressed or weepy or anything like that include these facts as well. Give them the best detailed description you can. #4 I recommend MAILING everything to the local SS office. I mail everything "Signature required" so I have proof of when it arrived in their office & who signed for it. Again, it cost more but when they say "We never received it" you will know better and you have proof. #5 Don't exclude bank info or any other financial info you have. Having the assets should not stop you from being approved for disability payments however, it does effect if you qualify for SSI (Supplemental Security Income); if also affects if you qualify for Medicaid or Medicare. However, in today's times (& remember they are the Gov't and have access to info about you that no other business can obtain) if you lie or exclude it they will find out about it. All bank accounts by law have to be tied to Social Security number, Green card # etc. now (I think that law went into effect in 2003) so they will know all of this whether you tell them or not and you will definately get denied if you lie. #6 In terms of assets/money/investments etc if you can move them out of your name that may help. You may want to hire an attorney to ask some questions. I'm not sure but I believe if you did this you would NOT want to put this in say a husbands name because as a couple they are still "your assets" ...you would have to put them in the name of a parent or sibling etc. You would also need to think about how to protect those assets in the event the person you turned it over to died. (For example, if you put everything under a parent and they die how do you protect yourself as much as possible so that you still get benefit of the money if you need it). The other thing about doing this is if you need to this then do it but wait about 6 months before applying for SS disability. I think they review the last 4-6 months of financial records and if they see big shifts they will deny your claim. Again..I don't think this really affects SSDI (Disability payments) but it does impact if you get SSI payments or state programs you may qualify for (food stamps, state medical assistance, etc).

I'm sooo HAPPY for you!!! That's such great news, especially after all you've been through. Hope you keep feeling better and better with each day!!!

The hormones I was referring to are estrogen, progesterone & testosterone. I had a saliva test to find out where my levels were. If you are interested you can check out this site: http://www.salivatest.com/

My personal experience....a SMALL dose of a beta blocker is sometimes effective at bringing my heart rate down to a more normal level (say around 100 instead of 160) yet a low enough does doesn't lower my blood pressure so low that I pass out from low BP. I think in theory this is how they want it to work but that's not to say it always does. I could be wrong but this is my understanding as it relates to my circumstances.

I don't have any great words of advice; I have been on many meds and various combinations of them. I have also tried compression hose, added salt to diet, eating healthy, trying to sleep plenty, doing as much exercise as possible, tilting the head of my bed up. I have gotten little relief. So...no words of wisdom but I do relate to what you are saying and I wanted to offer my support. Hang in there and let us know what happens on Monday. You aren't alone in dealing with this! I hope you'll find something soon that will at least bring you some relief!

Jennifer, I jokingly asked my cardiologist one time if my tachycardia counted as a cardiovascular workout. He said, " technically yes however, it does nothing to maintain your muscle tone." I currently have physical therapy twice a week and I do exercises at home. Mostly we work on muscle tone at this point which really doesn't elevate the heart rate. It is slow work but consistent. The first goal is they want you not to lose any further muscle tone. Once you rebuild some tone then you slowly add things and your body will adjust some. You may never be able to walk or run like a "normal" person but there are things you can do that won't hurt you and may in fact help you.

I just needed to vent.... Okay. So I'm trying to get set up for in-home IV saline so I don't have to go to the ER all the time. When I'm in the ER Medicare will pay but I just found out that if I receive in-home saline Medicare will not pay for the Saline because that is considered drug/medication and there is no coverage. They will pay 80% of approved charges for the home health nurse but not for the saline. UGGGHHHH!!!!!!!