JacobyD

Jessica- Just letting you know that you are in my prayers as well. Whatever you do, don't do too much. We all know you will pay for it down the road. Please be as good to yourself as you can until things settle down. Wish I could be more help! -Dan

Thank you so much for all your good thoughts. I am hanging in there and know I will find an answer soon. I am going to try another new med this week (Thanks again, Nina), and have some more 'throat specialist' appointments set up. I am also in line for a Clinical Study and possible Clinical Trial at NIH. I will keep you posted! Dan

Thanks all . I really needed your thoughts today! I should know better than to go to the hospital on Friday the 13th!!! I had a very bad throat closing episode last night. My wife said I was starting to turn blue! We called the neurologist on call, and heard from him early this morning. He said we needed to come to the ER ASAP and that they would perform a CT scan and X-ray of my neck and take it from there. Here's what I wrote in my journal: Arrived at the ER at 10am as per Dr. Voda. Sat in the waiting room full of TB patients for three and a half hours. Finally had the honor of being looked over by a medical student. It seems that none of the CT scans or X-rays that I was supposed to have were set up. Sat on a gurney in the hallway for an hour. By 2pm I was finally able to visit my ENT. Of course the nurse walked in with a laryngoscope (I have had 12, including one last week). I told her to back off! Dr. DiNardo does NOT want me to have a tracheostomy. He is CONVINCED that the worst thing that will happen to me is that I will stop breathing and pass out. Sounds like a LOT more fun than a trach! He also believes (even though this problem has been going on for 4 years) that it is a transient problem. In the mean time, I should just see a speech therapist to learn some 'coping' techniques that will help 'instantly' stop my throat spasms. That will be scheduled for sometime in October I'm sure. Not too happy with the way the day went. I am REALLY hoping to hear from NIH in the VERY near future (regarding 2 Dysphagia Clinical Studies). Oh yeah, to top it off, my Levsin prescription won't be available until Monday. More to come! Anyway, thanks again for all your hugs, positive thoughts, and prayers. They must have worked. I'm still here!

OK Mighty. Here's the scoop: I had an appointment with my neurologist and am trying to get my ongoing throat problems straightened out. I talked to her about Levsin (actually sublingual Nulev) and if its OK with my GI doc I am going to give it a shot. I am also set up for another modified barium swallow (yuck) and and EMG on the nerves in my throat (ouch). My neuro also found an EKG that was given to me 2 months after I crashed that showed that I had a small heart attack! None of the docs ever mentioned that to me! Fortunately all of my subsequent EKGs, ECHOs, and a stress test all show my heart to be in great shape. I also discussed with her my possible participation in a Clinical Study and/or Trial on Dysphagia at NIH. All in all a really fun day! Hope that answers your question ! See ya at the pond Nina! -Dan

I just got back from a doctor's visit at the hospital a few minutes ago. My wife was pushing me down the hall in my wheelchair when a nurse said to me "Wow! It's not even Valentine's Day yet and you are already getting the royal treatment!". I smiled at her and replied "I know! And I'm not even sick. I work here!".

Same here. I've had a few endoscopies to intall/remove peg-j feeding tubes. The last one I had I was wide awake through the entire procedure. This was not a good experience. Like Timbo said, make sure you get a decent anesthetist! Good luck, -Dan

I've had POTS for just over 3 years with VERY many low points and some tolerable periods. According to my most recent autonomic tests my doctors believe that my autonomic nervous system is healing. I had the flu the entire week before I crashed, so the doctors also believe that I had a viral onset. I am still having some serious problems with throat spasms and swallowing which have seemed to have gotten worse over the last several weeks. I am treating this as a separate problem (and one that I believe may have even contributed to my crashing) and hope to have it resolved ASAP! Hang in there. There are good days ahead! -Dan

Hi UnicornIsis- Hi. I live just west of Richmond in Midlothian just east of the Powhatan County line near the James River. I was just in Charlottesville on Wednesday seeing Dr. Lawrence Phillips at UVA Medical Center. He is a neurologist with quite a bit of knowledge about POTS, and might be someone you would want to see. The good news for me is that my autonomic problems seem to be fading. The bad news is that I have another seemingly unrelated symptom (severe difficulty swallowing). There is hope for recovery, though you will no doubt have good days and bad until that happens. There other members on this board who live on the Richmond area who might be able to relate to your symptoms more than I can. I never had hypotension. I had tachycardia, gastroparesis, and sometimes hypertension. I hope you find the answers you are looking for, and know others here will support you when you are at your worst. Best of luck, -Dan

Thanks Nina! Levsin is now on my shopping list for my next trip to the doctors.

Thanks for all the support and great suggestions! I have had some very detailed swallowing tests, including motility and real-time swallowing x-rays and barium swallows. I have been scoped by my ENT about 7 times, and choked with an endoscope 3 times by my GI doc. Everything seems to be structurally sound. I have also investigated the panic and anxiety angles. My psychologist does not believe I am suffering from panic disorder and can't conclude that any anxiety I may suffer is the result or cause of these throat episodes. I am going to do my best to taper off the Ativan, or at least lower my dose to something more reasonable over the coming months. I have already increased my exercise routine. I would like to get some cognitive behavioral training, which I know very little about. I am going to set that up with my psychologist, but would really like to find a home-based CD or DVD based version so that I can work at my own pace. Don't know if this kind of product exists, or if it would be a good idea to try and treat myself. I'll have to do a bit of research on the web today! Thanks again for all of your support. Nina- I am going to ask my doctor about Levsin. That's one I haven't tried yet. Since I don't have stomach muscle spasms my only concern is that it would slow my motility, but I speak out of total ignorance of the drug . Thanks! EM-I'm off to check out the links you posted. Thank you so much. -Dan

Dr. Phillips thinks that because I had an apparent 'viral onset' that I am one of the lucky ones who eventually 'recovered' - though I have a long way to go before I am close to being fully functional again !

I would say NO WAY! Unless they were used for less than a few days or only small doses as needed. Everytime I told one of my doctors about a new or increasing symptom, they replied "just take another mg of Ativan every day". Nice. Live and learn!

I traveled to Charlottesville, Virginia today to see Dr. Lawrence Phillips who spent a great deal of time reviewing my case history and performing a series of 'standard' neurological tests. I also had my second tilt table test today, which I passed. This was the good news (you could even consider it great news). My first tilt table test almost three years ago was sheer ****, end ended after just 3 minutes. This time I was able to remain 'upright' with relatively small changes in my BP and HR. My HR ranged from 79 to 125 or so bpm, and my BP ranged from 100/70 to 120/80. The bad news was that he did not know what to make of my throat problems. As some of you know, I have frequent episodes where I can't instigate a swallow and began having 'throat closing' episodes beginning almost a year before my 'day of sudden onset' of POTS. His take on it was that I have become deconditioned and oversensitive to what he considers to be 'normal' swallowing activities (based on my tests from last summer at the University of Texas). He felt that with a slow increase in exercise and a decrease in my Lorazepam (Ativan) intake, I should begin to see dramatic improvements in my health which should include my throat problems. I would like to believe this is the case but I still don't understand why I get these frightening 'throat spasm' episodes out of the blue even when I am not thinking about my condition. Oh well. I will give it my best shot but I went into this appointment wanting to focus on nothing but my throat problems. The visit was well worth the trip, and Dr. Phillips was very thorough and knowledgeable regarding my autonomic situation. The theory that I am 'oversensitive' to the natural activities of my throat might even be true, but it sure would be nice if just one doctor had the heart or the huevos to take it to the next step and try and help me with this debilitating problem. Even just a "Here's the name of a great speech therapist" or "Let me give you the name of someone who can help you with tapering off your Lorazepam". One more hopeful trip (but very thankful that the POTS symptoms are fading) that has ended without answers. Foiled again.... -Dan PS: Don't get me wrong, I am happy about his take on my autonomic condition. I am also going to try what he suggested, and hopefully will be able to post here in a few months that he was right on the money and my nightmare is over!

All the time. Generally my body temp is low in the morning (97.4-98) and higher in the evening (98.4-99.4). Even while my other autonomic symptoms come and go, this one is a constant.

Sublingual Zofran always works for me. If you have nausea because your stomach is not emptying, you might want to try Domperidone. You will need to get this through a compounding pharmacy, and the liquid suspension version seems to work a bit better - for me. We all react differently! Good luck. I know how nasty constant nausea can be.... -Dan

Hi Nina. Glad you got things to 'calm down' a bit. I used to have trouble with BP spikes all the time and have tried several meds including Cozaar (as per Dr. Grubb), a calcium channel blocker, and others. None of them worked for me. They tended to lower my BP just to the point of making me nauseous! My BP wasn't especially high but usually spikes during one of my patented 'throat spasm' episodes . Best, -Dan

Any improvement with your daughter's swallowing problems? I am still seeking answers myself. I hope this symptom has improved - I know how frustrating it can be. -Dan

When i first became ill and was bedridden for 4 months, my HR would jump from 110 bpm to over 160 bpm just from reaching for a glass of water or rolling over. I was on a BB for a couple of years and stopped last June. My HR is still elevated when I stand and walk, though I don't feel the big increase when moving around while sitting or laying down anymore. Hope yours improves as well. Best, -dan

You go Nina! You should be proud...

EM- I had thyroid cancer in 1996 followed by a complete thyroidectomy. Now that I have total control over my thyroid hormone levels (via adjusting my Synthroid doses), I can say for sure that thyroid problems can be directly related to many autonomic symptoms. I recently lowered my Synthroid dose and after a couple of weeks experienced a lower heart rate, less nausea, and I felt better overall. Following a thyroidectomy, it is usually the doctor's goal to put you on as high a dose of synthetic thyroid hormone as possible. This - in theory - prevents your body from trying to generate natural thyroid hormones on its own, and should suppress any return of the thyroid cancer. What they forget to think about is the price you pay for being in a Synthroid-induced state of hyperthyroidism over a long period of time. I am convinced that the high level of Synthroid I was taking contributed to some degree to my eventually 'crashing' a few years later. I know this isn't directly related to your autoimmune thyroid disease condition, but you should have your THS and thyroid levels checked to see if you might be in a hypo or hyperthyroid state. I have also had a negative EBV test and multiple negative tests for Lyme (Western Blot) performed by the most experienced Lyme Lab I could find (IGeneX Labs). Hope this helps and that you find answers, -Dan

Pam- I don't know what meds you are on, but I have a couple of friends that use Cognitex. Check with your doctor FIRST though!!!! Good luck, -Dan http://www.lef.org/newshop/items/item00629.html

Hi Bethany. Yes, I also get cramps now and then. I tried a new medication a few weeks ago (Gabitril) to actually try and help with the throat spasms but after a week or two I started getting extreme cramping on the right and left side of my neck. I also had with what felt like a cramp right in the middle of my throat. I couldn't even talk for a day or two after that one. I can relate to the yawning as well! That will do it every time! Hope you are feeling better and have a great holiday. -Dan

Thank you Ling! That is very kind of you . -Dan

Roy- I have had problems with Dysautonomia for almost 3 years now. Like you, my 'throat spasms' have been my number one complaint other than tachycardia. My throat used to 'close up' every couple of weeks for a few seconds. Now that I am on meds (though they aren't working much any more), I have more episodes of impending throat spasms. I have also had many throat and neck muscle cramps over the last few months. My 'day of sudden onset' was also preceded by a flu-like episode. Some of my doctors have suggested that this symptom might be caused by damage to a cranial nerve from a virus, or damage caused by trauma to the neck. I had a pretty bad snow skiing accident a few years ago. I have also had GI problems within the past 3 years, and my ENT thinks that my throat spasms are GERD related, and says it is common to have my kind of symptom without having the traditional heartburn that can accompany GERD. I am currently pursuing all avenues to determine the cause of this annoying and life-altering symptom, and will post here if I get any answers any time soon. If you find any remedies (or even a cause), I would be very interested in hearing about it. Best of luck, -Dan

Hi Nicole. I've tried many SSRIs and gave myself about 3-4 weeks to see if the side effects would wear off. For me it never happened, and I tried Celexa, LexaPro, and Paxil. My side effects were usually a very hyper-stimulated feeling and sharp rise in blood pressure, not to mention the anxiety that came with it ! From what I have read on these boards most people do get over the side effects and find benefit from the SSRI class of meds. I hope this is the case for you. Best of luck, -Dan