JacobyD

I have been doing SOME work from home. I am lucky enough to be in a profession that will allow this. Working for long periods of time wipes me out and I don't see myself headed back to the office for 10-12 hour days any time soon... -Dan

Hi Stacey. Driving was my passion before I became ill. I used to race in organized events (mine was the green car in my avatar). About 6 months after I became ill I realized I wouldn't be racing any time soon and had to sell the car. I couldn't even sit up to look out the window to watch it being trailered away. I replaced it with a much less expensive, yet almost as fun car. A supercharged MINI Cooper. I have had this car for two years now, and it has a grand total of 1,500 miles on it. After three years of this stuff, I can honestly say that once I am able to drive on a semi-regular basis I will really feel like I have acheived something! For now, just taking short hops around the neighborhood every couple of weeks will have to do. I don't faint, but driving seems to make me symptomatic. Must be the need for total concentration and all the arm and leg movement...who knows. If you do feel like you might faint I would HIGHLY recommend that you not drive! I hope you start feeling better soon. -Dan

Lisa- I was on a beta blocker for a couple of years, but stopped taking them this past June. Since then my heart rate has been higher than it should be, but pretty stable. I do notice that when I really over do it (heart rate hits 155+ bpm) my heart rate will remain higher than usual for another day or so. Sometimes my HR will stay near 100 bpm even supine. ethansmom is right, what your heart is doing is normal by responding to your brain's need for blood with a faster beat. I was told that I didn't have a 'heart' problem, but that I had a 'your brain needs more blood' problem ! I hope things settle down for you soon. Best, -Dan

Wow Nina. What a small world. I think I told you I was born in Philly. My dad went to U of Penn, as did my uncles. My uncle brought up Dr. Blumin's name as someone I should come to Philly and see regarding my thyroid cancer surgery and the possibility that it and/or my skiing accident might be to blame for my throat spasm problems. I am looking for an ENT who is interested in doing some specialized testing on my recurrent laryngeal nerve and/or cricothyroid muscle to see if they could be the cause of my symptoms. This could be the guy... -Dan

Pretty strange. I have had mornings when I wake up and have no strength in my hands. I can't even turn the lid on the pill crusher to take my morning meds . It seems to pass after a few minutes though, but I have never experienced this until a few months ago. I have even added grip resistance exercises to my already 'weak' workout. I hope it passes and does not become a regular symptom for you. Good luck, -Dan

Hi Nina! I have learned to live with nausea almost every day. I have been over-doing it lately and in addition to my heart rate hitting up near 160 bpm again, the nausea has increased as well. Sublingual Zofran (8 mg) is the only thing that does the trick for me, but it is very expensive. When I am having an especially 'nauseous' week, I will put on a pair of 'Sea Bands' first thing in the morning and they really work to keep the nausea from appearing. I hope you get relief soon, and if you find any new remedies (I've heard McCormick Peppermint Extract in hot tea can help) please let us all know. Good luck! -Dan

Very helpful! Thanks Nina. I can save quite a bit this way, though I can't get Ativan. That's a good thing though, as I am finally beginning to taper off that garbage. I am seeing my pharmacologist this Wednesday and am going to do a complete review off all the meds I have tried and their effects - positive, negative, or neutral. After that I'm goin' shopping in the great white north...

Right now I am thankful for many things - especially my slowly improving health. I'm not sure how I will feel following an afternoon with the in-laws though !

Hi Ling. I have been almost completely debilitated for the last three years. I had a short period where I was functioning at about 70% of my potential during the summer/fall of 2002, but outside of that I have either been bedridden (for a total of about 7 months) and/or housebound. I am currently experiencing some improvement, but like MightyMouse mentioned I have severe problems with my throat. I get spasms and choking sensations out of the blue that raise my anxiety levels and make it tough for me to get out on my own. I am still experiementing with new medications for my throat but am mostly on my own to research what medications might be helpful. The hard part is it can take several weeks before it can be determined if a new medication will work, have too many side effects, or won't have any positive effect at all. By the time I find something that works (SSRIs are out of the question for me) I will either die of old age or it will go away on its own! I hope you can find a doctor that understands how serious this illness is. I recently fired my primary care physician because she thought I was being uncooperative because she told me to get in my car and go to work every day! Not to offend the good doctors out there, but this one was a real jerk ! -Dan

That is grat news Timbo! We will keep hoping for the best for you and your dad. Hope you have a great Thanksgiving.... -Dan

Thanks for the replies and well wishes. Nina - I think this study is the one that is replacing the one Ernie participated in this past June. -Dan

Hello all. I was just notified that I was approved for participation in a clincical trial at NIH. The title of the study is "Clinical Laboratory Evaluation of Chronic Orthostatic Intolerance". Here is a link to their website with more details: NIH Web Page for Study ID 03-N-0314 Has anyone here ever participated in this particular study? If so, could you tell more more about it? I probably will not be going until Spring 2004. Thanks in advance! -Dan

Hi Nicole. I get mood swings all the time and every other week or so get pretty depressed - even when I am not feeling as bad as other times. These 'emotions' are also a symptom of our troubled autonomic nervous systems, and can really throw you out of balance - and can easily contribute to anxiety. Considering we still have most of our faculties about us, it would be hard for us not to be depressed from time to time - almost a sort of mourning for the life we used to have before this condition came to the surface and turned our lives upside down. The good news is that for most of us there is a lot of hope and an excellent chance that we will see improvement, and many of us will find a way to adjust to an almost normal life or find near complete recovery. I hope you find what makes you feel better, and if that means taking an SSRI that works you should feel lucky! Best, -Dan

Ditto! Always around 97.6, 98.6 when 'feverish'!

Tim- Thanks for the update. It sounds like good news, though we know he has a long road to recovery ahead of him. He is VERY fortunate he got to the hospital when he did. I have known a few fairly young people who ignored the warning signs and are not alive today because of it. We will continue to pray for his continued improvement. I hope you are handling the stress of this ordeal and that your health will not be greatly effected. Best, -Dan

Tim, we are still with you. I will be sure and pray for you both tonight. -Dan

We will be praying for him. Best, -Dan

My throat has been my major debilitating symptom throughout my illness over the last 3 years. The esophagus is part of your GI tract and much of our swallowing function is handled by the autonomic nervous system. I have had several periods when swallowing was almost impossible, had a couple of trips to the ER because of it, and even had to resort to a feeding tube twice - though I am now eating and drinking again. I am what (compared to others on this and other forums say) you would call a 'most extreme case'. I have heard of others with Dysautonomia having swallowing problems, but most of these problems are temporary. More people seem to have trouble digesting food than actually swallowing it. I also have a history of throat injury and surgery, with a complete thyroidectomy 7 years ago, a very bad snow skiing accident 5 years ago, and cervical fusion surgery 1 year ago. With all of these things working against me I also have constant throat spasms and 'throat closing' episodes. I often wear a soft cervical collar on the really bad days. Sorry for the long note, but to answer your question, swallowing difficulty (Dysphagia) is fairly common with us. She should still get checked out by an ENT just to be on the safe side. Odds are that this will be a symptom that will improve on its on. Good luck! -Dan

Hi hilfgirl33- Yes, I am waiting to see if an anti-anxiety med and/or the psychological sessions give me any added relief before I atart to taper. I have tried to taper in the past, and after a mg or so, I end up feeling like I need more than I did before I started to taper. I will keep you posted ! -Dan

Thanks Pam and Nina. The only non-SSRI I have tried is Buspar. After several weeks it seemed to have no negative or positive effect, and is also known not to have any positive effect in helping with Benzodiazepine withdrawal. I will look into Zoloft, Prozac, 5-HTP, Strattera, and Elavil though I am pretty sure I will only try another SSRI med as a last resort! Thanks again, -Dan

No more Paxil! It was way too over-stimulating and pushed me to the point of tremors, major BP spikes, hot flashes, palps, and throat spasms . If anyone can recommend a non-SSRI non-benzo anti-anxiety med please e-mail me! Calgon, take me away! Yikes! -Dan

uUpdate: I just had a hot flash/bp spike/throat spasm/tremors episode this afternoon. More side-effect than I was hoping for. Here we go...

Thank you! Sounds like the saline rinse and/or Benadryl/Zyrtec should do the trick. I'll give them a shot. I tried the breath-right strips with no luck. I also tried keeping the dog out of the room with no luck! I do have a Hepa air cleaner that I am going to get out of the closet and fire up tonight. Thanks again! -Dan

With the cool weather coming in, I have experienced a lot of congestion. Anybody use any remedies with success and no side effects? Many of the OTC meds seem to have too much sugar and/or alcohol... -Dan

Just an update. I'm on my 4th day of Paxil (low dose of 2.5mg). I am still feeling wired and hyper, though oddly enough I seem to be sleeping about 2 hours more than usual. I am yawning alot which is rough on my throat (I have frequent laryngospasms and 'throat closing' episodes). The wired and hyper feeling seems a little stronger each day, and I'm hoping it will fade over the coming week or two. I am very hopeful that I can get through these initial side-effects and get on with feeling some of the benefits I have heard so many talk about . -Dan